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• Ethical Considerations in Research | Types & Examples

Ethical Considerations in Research | Types & Examples

Published on October 18, 2021 by Pritha Bhandari . Revised on May 9, 2024.

Ethical considerations in research are a set of principles that guide your research designs and practices. Scientists and researchers must always adhere to a certain code of conduct when collecting data from people.

The goals of human research often include understanding real-life phenomena, studying effective treatments, investigating behaviors, and improving lives in other ways. What you decide to research and how you conduct that research involve key ethical considerations.

These considerations work to

• protect the rights of research participants
• enhance research validity
• maintain scientific or academic integrity

Table of contents

Why do research ethics matter, getting ethical approval for your study, types of ethical issues, voluntary participation, informed consent, confidentiality, potential for harm, results communication, examples of ethical failures, other interesting articles, frequently asked questions about research ethics.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe for research subjects.

You’ll balance pursuing important research objectives with using ethical research methods and procedures. It’s always necessary to prevent permanent or excessive harm to participants, whether inadvertent or not.

Defying research ethics will also lower the credibility of your research because it’s hard for others to trust your data if your methods are morally questionable.

Even if a research idea is valuable to society, it doesn’t justify violating the human rights or dignity of your study participants.

Prevent plagiarism. Run a free check.

Before you start any study involving data collection with people, you’ll submit your research proposal to an institutional review board (IRB) .

An IRB is a committee that checks whether your research aims and research design are ethically acceptable and follow your institution’s code of conduct. They check that your research materials and procedures are up to code.

If successful, you’ll receive IRB approval, and you can begin collecting data according to the approved procedures. If you want to make any changes to your procedures or materials, you’ll need to submit a modification application to the IRB for approval.

If unsuccessful, you may be asked to re-submit with modifications or your research proposal may receive a rejection. To get IRB approval, it’s important to explicitly note how you’ll tackle each of the ethical issues that may arise in your study.

There are several ethical issues you should always pay attention to in your research design, and these issues can overlap with each other.

You’ll usually outline ways you’ll deal with each issue in your research proposal if you plan to collect data from participants.

Voluntary participation means that all research subjects are free to choose to participate without any pressure or coercion.

All participants are able to withdraw from, or leave, the study at any point without feeling an obligation to continue. Your participants don’t need to provide a reason for leaving the study.

It’s important to make it clear to participants that there are no negative consequences or repercussions to their refusal to participate. After all, they’re taking the time to help you in the research process , so you should respect their decisions without trying to change their minds.

Voluntary participation is an ethical principle protected by international law and many scientific codes of conduct.

Take special care to ensure there’s no pressure on participants when you’re working with vulnerable groups of people who may find it hard to stop the study even when they want to.

Informed consent refers to a situation in which all potential participants receive and understand all the information they need to decide whether they want to participate. This includes information about the study’s benefits, risks, funding, and institutional approval.

You make sure to provide all potential participants with all the relevant information about

• what the study is about
• the risks and benefits of taking part
• how long the study will take
• your supervisor’s contact information and the institution’s approval number

Usually, you’ll provide participants with a text for them to read and ask them if they have any questions. If they agree to participate, they can sign or initial the consent form. Note that this may not be sufficient for informed consent when you work with particularly vulnerable groups of people.

If you’re collecting data from people with low literacy, make sure to verbally explain the consent form to them before they agree to participate.

For participants with very limited English proficiency, you should always translate the study materials or work with an interpreter so they have all the information in their first language.

In research with children, you’ll often need informed permission for their participation from their parents or guardians. Although children cannot give informed consent, it’s best to also ask for their assent (agreement) to participate, depending on their age and maturity level.

Anonymity means that you don’t know who the participants are and you can’t link any individual participant to their data.

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, and videos.

In many cases, it may be impossible to truly anonymize data collection . For example, data collected in person or by phone cannot be considered fully anonymous because some personal identifiers (demographic information or phone numbers) are impossible to hide.

You’ll also need to collect some identifying information if you give your participants the option to withdraw their data at a later stage.

Data pseudonymization is an alternative method where you replace identifying information about participants with pseudonymous, or fake, identifiers. The data can still be linked to participants but it’s harder to do so because you separate personal information from the study data.

Confidentiality means that you know who the participants are, but you remove all identifying information from your report.

All participants have a right to privacy, so you should protect their personal data for as long as you store or use it. Even when you can’t collect data anonymously, you should secure confidentiality whenever you can.

Some research designs aren’t conducive to confidentiality, but it’s important to make all attempts and inform participants of the risks involved.

As a researcher, you have to consider all possible sources of harm to participants. Harm can come in many different forms.

• Psychological harm: Sensitive questions or tasks may trigger negative emotions such as shame or anxiety.
• Social harm: Participation can involve social risks, public embarrassment, or stigma.
• Physical harm: Pain or injury can result from the study procedures.
• Legal harm: Reporting sensitive data could lead to legal risks or a breach of privacy.

It’s best to consider every possible source of harm in your study as well as concrete ways to mitigate them. Involve your supervisor to discuss steps for harm reduction.

Make sure to disclose all possible risks of harm to participants before the study to get informed consent. If there is a risk of harm, prepare to provide participants with resources or counseling or medical services if needed.

Some of these questions may bring up negative emotions, so you inform participants about the sensitive nature of the survey and assure them that their responses will be confidential.

The way you communicate your research results can sometimes involve ethical issues. Good science communication is honest, reliable, and credible. It’s best to make your results as transparent as possible.

Take steps to actively avoid plagiarism and research misconduct wherever possible.

Plagiarism means submitting others’ works as your own. Although it can be unintentional, copying someone else’s work without proper credit amounts to stealing. It’s an ethical problem in research communication because you may benefit by harming other researchers.

Self-plagiarism is when you republish or re-submit parts of your own papers or reports without properly citing your original work.

This is problematic because you may benefit from presenting your ideas as new and original even though they’ve already been published elsewhere in the past. You may also be infringing on your previous publisher’s copyright, violating an ethical code, or wasting time and resources by doing so.

In extreme cases of self-plagiarism, entire datasets or papers are sometimes duplicated. These are major ethical violations because they can skew research findings if taken as original data.

You notice that two published studies have similar characteristics even though they are from different years. Their sample sizes, locations, treatments, and results are highly similar, and the studies share one author in common.

Research misconduct

Research misconduct means making up or falsifying data, manipulating data analyses, or misrepresenting results in research reports. It’s a form of academic fraud.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement about data analyses.

Research misconduct is a serious ethical issue because it can undermine academic integrity and institutional credibility. It leads to a waste of funding and resources that could have been used for alternative research.

Later investigations revealed that they fabricated and manipulated their data to show a nonexistent link between vaccines and autism. Wakefield also neglected to disclose important conflicts of interest, and his medical license was taken away.

This fraudulent work sparked vaccine hesitancy among parents and caregivers. The rate of MMR vaccinations in children fell sharply, and measles outbreaks became more common due to a lack of herd immunity.

Research scandals with ethical failures are littered throughout history, but some took place not that long ago.

Some scientists in positions of power have historically mistreated or even abused research participants to investigate research problems at any cost. These participants were prisoners, under their care, or otherwise trusted them to treat them with dignity.

To demonstrate the importance of research ethics, we’ll briefly review two research studies that violated human rights in modern history.

These experiments were inhumane and resulted in trauma, permanent disabilities, or death in many cases.

After some Nazi doctors were put on trial for their crimes, the Nuremberg Code of research ethics for human experimentation was developed in 1947 to establish a new standard for human experimentation in medical research.

In reality, the actual goal was to study the effects of the disease when left untreated, and the researchers never informed participants about their diagnoses or the research aims.

Although participants experienced severe health problems, including blindness and other complications, the researchers only pretended to provide medical care.

When treatment became possible in 1943, 11 years after the study began, none of the participants were offered it, despite their health conditions and high risk of death.

Ethical failures like these resulted in severe harm to participants, wasted resources, and lower trust in science and scientists. This is why all research institutions have strict ethical guidelines for performing research.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

• Normal distribution
• Measures of central tendency
• Chi square tests
• Confidence interval
• Quartiles & Quantiles
• Cluster sampling
• Stratified sampling
• Thematic analysis
• Cohort study
• Peer review
• Ethnography

Research bias

• Implicit bias
• Cognitive bias
• Conformity bias
• Hawthorne effect
• Availability heuristic
• Attrition bias
• Social desirability bias

Ethical considerations in research are a set of principles that guide your research designs and practices. These principles include voluntary participation, informed consent, anonymity, confidentiality, potential for harm, and results communication.

Scientists and researchers must always adhere to a certain code of conduct when collecting data from others .

These considerations protect the rights of research participants, enhance research validity , and maintain scientific integrity.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe.

Anonymity means you don’t know who the participants are, while confidentiality means you know who they are but remove identifying information from your research report. Both are important ethical considerations .

You can only guarantee anonymity by not collecting any personally identifying information—for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, or videos.

You can keep data confidential by using aggregate information in your research report, so that you only refer to groups of participants rather than individuals.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement but a serious ethical failure.

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Ethical Considerations – Types, Examples and Writing Guide

Table of Contents

Ethical Considerations

Ethical considerations in research refer to the principles and guidelines that researchers must follow to ensure that their studies are conducted in an ethical and responsible manner. These considerations are designed to protect the rights, safety, and well-being of research participants, as well as the integrity and credibility of the research itself

Some of the key ethical considerations in research include:

• Informed consent: Researchers must obtain informed consent from study participants, which means they must inform participants about the study’s purpose, procedures, risks, benefits, and their right to withdraw at any time.
• Privacy and confidentiality : Researchers must ensure that participants’ privacy and confidentiality are protected. This means that personal information should be kept confidential and not shared without the participant’s consent.
• Harm reduction : Researchers must ensure that the study does not harm the participants physically or psychologically. They must take steps to minimize the risks associated with the study.
• Fairness and equity : Researchers must ensure that the study does not discriminate against any particular group or individual. They should treat all participants equally and fairly.
• Use of deception: Researchers must use deception only if it is necessary to achieve the study’s objectives. They must inform participants of the deception as soon as possible.
• Use of vulnerable populations : Researchers must be especially cautious when working with vulnerable populations, such as children, pregnant women, prisoners, and individuals with cognitive or intellectual disabilities.
• Conflict of interest : Researchers must disclose any potential conflicts of interest that may affect the study’s integrity. This includes financial or personal relationships that could influence the study’s results.
• Data manipulation: Researchers must not manipulate data to support a particular hypothesis or agenda. They should report the results of the study objectively, even if the findings are not consistent with their expectations.
• Intellectual property: Researchers must respect intellectual property rights and give credit to previous studies and research.
• Cultural sensitivity : Researchers must be sensitive to the cultural norms and beliefs of the participants. They should avoid imposing their values and beliefs on the participants and should be respectful of their cultural practices.

Types of Ethical Considerations

Types of Ethical Considerations are as follows:

Research Ethics:

This includes ethical principles and guidelines that govern research involving human or animal subjects, ensuring that the research is conducted in an ethical and responsible manner.

Business Ethics :

This refers to ethical principles and standards that guide business practices and decision-making, such as transparency, honesty, fairness, and social responsibility.

Medical Ethics :

This refers to ethical principles and standards that govern the practice of medicine, including the duty to protect patient autonomy, informed consent, confidentiality, and non-maleficence.

Environmental Ethics :

This involves ethical principles and values that guide our interactions with the natural world, including the obligation to protect the environment, minimize harm, and promote sustainability.

Legal Ethics

This involves ethical principles and standards that guide the conduct of legal professionals, including issues such as confidentiality, conflicts of interest, and professional competence.

Social Ethics

This involves ethical principles and values that guide our interactions with other individuals and society as a whole, including issues such as justice, fairness, and human rights.

Information Ethics

This involves ethical principles and values that govern the use and dissemination of information, including issues such as privacy, accuracy, and intellectual property.

Cultural Ethics

This involves ethical principles and values that govern the relationship between different cultures and communities, including issues such as respect for diversity, cultural sensitivity, and inclusivity.

Technological Ethics

This refers to ethical principles and guidelines that govern the development, use, and impact of technology, including issues such as privacy, security, and social responsibility.

Journalism Ethics

This involves ethical principles and standards that guide the practice of journalism, including issues such as accuracy, fairness, and the public interest.

Educational Ethics

This refers to ethical principles and standards that guide the practice of education, including issues such as academic integrity, fairness, and respect for diversity.

Political Ethics

This involves ethical principles and values that guide political decision-making and behavior, including issues such as accountability, transparency, and the protection of civil liberties.

Professional Ethics

This refers to ethical principles and standards that guide the conduct of professionals in various fields, including issues such as honesty, integrity, and competence.

Personal Ethics

This involves ethical principles and values that guide individual behavior and decision-making, including issues such as personal responsibility, honesty, and respect for others.

Global Ethics

This involves ethical principles and values that guide our interactions with other nations and the global community, including issues such as human rights, environmental protection, and social justice.

Applications of Ethical Considerations

Ethical considerations are important in many areas of society, including medicine, business, law, and technology. Here are some specific applications of ethical considerations:

• Medical research : Ethical considerations are crucial in medical research, particularly when human subjects are involved. Researchers must ensure that their studies are conducted in a way that does not harm participants and that participants give informed consent before participating.
• Business practices: Ethical considerations are also important in business, where companies must make decisions that are socially responsible and avoid activities that are harmful to society. For example, companies must ensure that their products are safe for consumers and that they do not engage in exploitative labor practices.
• Environmental protection: Ethical considerations play a crucial role in environmental protection, as companies and governments must weigh the benefits of economic development against the potential harm to the environment. Decisions about land use, resource allocation, and pollution must be made in an ethical manner that takes into account the long-term consequences for the planet and future generations.
• Technology development : As technology continues to advance rapidly, ethical considerations become increasingly important in areas such as artificial intelligence, robotics, and genetic engineering. Developers must ensure that their creations do not harm humans or the environment and that they are developed in a way that is fair and equitable.
• Legal system : The legal system relies on ethical considerations to ensure that justice is served and that individuals are treated fairly. Lawyers and judges must abide by ethical standards to maintain the integrity of the legal system and to protect the rights of all individuals involved.

Examples of Ethical Considerations

Here are a few examples of ethical considerations in different contexts:

• In healthcare : A doctor must ensure that they provide the best possible care to their patients and avoid causing them harm. They must respect the autonomy of their patients, and obtain informed consent before administering any treatment or procedure. They must also ensure that they maintain patient confidentiality and avoid any conflicts of interest.
• In the workplace: An employer must ensure that they treat their employees fairly and with respect, provide them with a safe working environment, and pay them a fair wage. They must also avoid any discrimination based on race, gender, religion, or any other characteristic protected by law.
• In the media : Journalists must ensure that they report the news accurately and without bias. They must respect the privacy of individuals and avoid causing harm or distress. They must also be transparent about their sources and avoid any conflicts of interest.
• In research: Researchers must ensure that they conduct their studies ethically and with integrity. They must obtain informed consent from participants, protect their privacy, and avoid any harm or discomfort. They must also ensure that their findings are reported accurately and without bias.
• In personal relationships : People must ensure that they treat others with respect and kindness, and avoid causing harm or distress. They must respect the autonomy of others and avoid any actions that would be considered unethical, such as lying or cheating. They must also respect the confidentiality of others and maintain their privacy.

How to Write Ethical Considerations

When writing about research involving human subjects or animals, it is essential to include ethical considerations to ensure that the study is conducted in a manner that is morally responsible and in accordance with professional standards. Here are some steps to help you write ethical considerations:

• Describe the ethical principles: Start by explaining the ethical principles that will guide the research. These could include principles such as respect for persons, beneficence, and justice.
• Discuss informed consent : Informed consent is a critical ethical consideration when conducting research. Explain how you will obtain informed consent from participants, including how you will explain the purpose of the study, potential risks and benefits, and how you will protect their privacy.
• Address confidentiality : Describe how you will protect the confidentiality of the participants’ personal information and data, including any measures you will take to ensure that the data is kept secure and confidential.
• Consider potential risks and benefits : Describe any potential risks or harms to participants that could result from the study and how you will minimize those risks. Also, discuss the potential benefits of the study, both to the participants and to society.
• Discuss the use of animals : If the research involves the use of animals, address the ethical considerations related to animal welfare. Explain how you will minimize any potential harm to the animals and ensure that they are treated ethically.
• Mention the ethical approval : Finally, it’s essential to acknowledge that the research has received ethical approval from the relevant institutional review board or ethics committee. State the name of the committee, the date of approval, and any specific conditions or requirements that were imposed.

When to Write Ethical Considerations

Ethical considerations should be written whenever research involves human subjects or has the potential to impact human beings, animals, or the environment in some way. Ethical considerations are also important when research involves sensitive topics, such as mental health, sexuality, or religion.

In general, ethical considerations should be an integral part of any research project, regardless of the field or subject matter. This means that they should be considered at every stage of the research process, from the initial planning and design phase to data collection, analysis, and dissemination.

Ethical considerations should also be written in accordance with the guidelines and standards set by the relevant regulatory bodies and professional associations. These guidelines may vary depending on the discipline, so it is important to be familiar with the specific requirements of your field.

Purpose of Ethical Considerations

Ethical considerations are an essential aspect of many areas of life, including business, healthcare, research, and social interactions. The primary purposes of ethical considerations are:

• Protection of human rights: Ethical considerations help ensure that people’s rights are respected and protected. This includes respecting their autonomy, ensuring their privacy is respected, and ensuring that they are not subjected to harm or exploitation.
• Promoting fairness and justice: Ethical considerations help ensure that people are treated fairly and justly, without discrimination or bias. This includes ensuring that everyone has equal access to resources and opportunities, and that decisions are made based on merit rather than personal biases or prejudices.
• Promoting honesty and transparency : Ethical considerations help ensure that people are truthful and transparent in their actions and decisions. This includes being open and honest about conflicts of interest, disclosing potential risks, and communicating clearly with others.
• Maintaining public trust: Ethical considerations help maintain public trust in institutions and individuals. This is important for building and maintaining relationships with customers, patients, colleagues, and other stakeholders.
• Ensuring responsible conduct: Ethical considerations help ensure that people act responsibly and are accountable for their actions. This includes adhering to professional standards and codes of conduct, following laws and regulations, and avoiding behaviors that could harm others or damage the environment.

Advantages of Ethical Considerations

Here are some of the advantages of ethical considerations:

• Builds Trust : When individuals or organizations follow ethical considerations, it creates a sense of trust among stakeholders, including customers, clients, and employees. This trust can lead to stronger relationships and long-term loyalty.
• Reputation and Brand Image : Ethical considerations are often linked to a company’s brand image and reputation. By following ethical practices, a company can establish a positive image and reputation that can enhance its brand value.
• Avoids Legal Issues: Ethical considerations can help individuals and organizations avoid legal issues and penalties. By adhering to ethical principles, companies can reduce the risk of facing lawsuits, regulatory investigations, and fines.
• Increases Employee Retention and Motivation: Employees tend to be more satisfied and motivated when they work for an organization that values ethics. Companies that prioritize ethical considerations tend to have higher employee retention rates, leading to lower recruitment costs.
• Enhances Decision-making: Ethical considerations help individuals and organizations make better decisions. By considering the ethical implications of their actions, decision-makers can evaluate the potential consequences and choose the best course of action.
• Positive Impact on Society: Ethical considerations have a positive impact on society as a whole. By following ethical practices, companies can contribute to social and environmental causes, leading to a more sustainable and equitable society.

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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Introduction.

This high-level guidance has been developed by the UK Statistics Authority’s Centre for Applied Data Ethics (CADE), and the UK Government Data Quality Hub (DQHub), based at the Office for National Statistics (ONS). The guidance can be used as a practical resource to help researchers identify different ethical issues when conducting qualitative research.  

This guidance is not exhaustive but aims to support researchers navigating the ethical issues surrounding qualitative research projects (particularly in relation to primary data collection). It brings together existing literature on qualitative research methods and their ethical concerns. Links to further resources are provided if you would like to read about aspects in more detail.  

The guidance has been created for researchers using qualitative methods within the ONS . However, the ethical considerations discussed, and the mitigations for these, can be more widely applied to all types of qualitative research.  

The guidance is divided into several parts.    

• An introduction to qualitative research and why ethics matters in this space.   
• An overview of some of the ethical considerations associated with qualitative research methods, and some potential mitigations for these issues. This includes an overview of some of the qualitative methods used within the ONS.  
• An ethics checklist which summarises the main points covered in this guidance.    
• A list of helpful links to further resources.   

Qualitative Research: Ethical Considerations

• First Online: 01 November 2019

Cite this chapter

• Anna-Maija Pietilä 4 ,
• Sanna-Maria Nurmi 4 ,
• Arja Halkoaho 4 , 5 &
• Helvi Kyngäs 6  

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12 Citations

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Ethical aspects include perspectives of subject protection and conducting research based on ethical standards. This chapter aims to highlight the ethical aspects of qualitative research, with particular emphasis on content analysis. The chapter begins by presenting four ethical principles—autonomy, non-maleficence, beneficence, and justice—that were first brought to attention by Beauchamp and Childress (Principles of biomedical ethics. Oxford University Press, New York, 2013). These principles form the basis for the protection of the subject in qualitative research. Next, Shamoon and Resnik’s (Responsible conduct of research. Oxford University Press, New York, 2015) principles for responsible research conduct are described. The ethical framework presented by Emanuel et al. (J Infect Dis 189:930–937, 2000; JAMA 283:2701–2711, 2004), which includes eight ethical requirements, is then introduced, and later used to explore the ethical aspects of content analysis based on an example of qualitative research. The chapter concludes by discussing several challenges that researchers may face when applying content analysis to qualitative research.

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Pietilä, AM., Nurmi, SM., Halkoaho, A., Kyngäs, H. (2020). Qualitative Research: Ethical Considerations. In: Kyngäs, H., Mikkonen, K., Kääriäinen, M. (eds) The Application of Content Analysis in Nursing Science Research. Springer, Cham. https://doi.org/10.1007/978-3-030-30199-6_6

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• Ethical Considerations in Research | Types & Examples

Ethical Considerations in Research | Types & Examples

Published on 7 May 2022 by Pritha Bhandari . Revised on 6 July 2024.

Ethical considerations in research are a set of principles that guide your research designs and practices. Scientists and researchers must always adhere to a certain code of conduct when collecting data from people.

The goals of human research often include understanding real-life phenomena, studying effective treatments, investigating behaviours, and improving lives in other ways. What you decide to research and how you conduct that research involve key ethical considerations.

These considerations work to:

• Protect the rights of research participants
• Enhance research validity
• Maintain scientific integrity

Table of contents

Why do research ethics matter, getting ethical approval for your study, types of ethical issues, voluntary participation, informed consent, confidentiality, potential for harm, results communication, examples of ethical failures, frequently asked questions about research ethics.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe for research subjects.

You’ll balance pursuing important research aims with using ethical research methods and procedures. It’s always necessary to prevent permanent or excessive harm to participants, whether inadvertent or not.

Defying research ethics will also lower the credibility of your research because it’s hard for others to trust your data if your methods are morally questionable.

Even if a research idea is valuable to society, it doesn’t justify violating the human rights or dignity of your study participants.

Prevent plagiarism, run a free check.

Before you start any study involving data collection with people, you’ll submit your research proposal to an institutional review board (IRB) .

An IRB is a committee that checks whether your research aims and research design are ethically acceptable and follow your institution’s code of conduct. They check that your research materials and procedures are up to code.

If successful, you’ll receive IRB approval, and you can begin collecting data according to the approved procedures. If you want to make any changes to your procedures or materials, you’ll need to submit a modification application to the IRB for approval.

If unsuccessful, you may be asked to re-submit with modifications or your research proposal may receive a rejection. To get IRB approval, it’s important to explicitly note how you’ll tackle each of the ethical issues that may arise in your study.

There are several ethical issues you should always pay attention to in your research design, and these issues can overlap with each other.

You’ll usually outline ways you’ll deal with each issue in your research proposal if you plan to collect data from participants.

Voluntary participation means that all research subjects are free to choose to participate without any pressure or coercion.

All participants are able to withdraw from, or leave, the study at any point without feeling an obligation to continue. Your participants don’t need to provide a reason for leaving the study.

It’s important to make it clear to participants that there are no negative consequences or repercussions to their refusal to participate. After all, they’re taking the time to help you in the research process, so you should respect their decisions without trying to change their minds.

Voluntary participation is an ethical principle protected by international law and many scientific codes of conduct.

Take special care to ensure there’s no pressure on participants when you’re working with vulnerable groups of people who may find it hard to stop the study even when they want to.

Informed consent refers to a situation in which all potential participants receive and understand all the information they need to decide whether they want to participate. This includes information about the study’s benefits, risks, funding, and institutional approval.

• What the study is about
• The risks and benefits of taking part
• How long the study will take
• Your supervisor’s contact information and the institution’s approval number

Usually, you’ll provide participants with a text for them to read and ask them if they have any questions. If they agree to participate, they can sign or initial the consent form. Note that this may not be sufficient for informed consent when you work with particularly vulnerable groups of people.

If you’re collecting data from people with low literacy, make sure to verbally explain the consent form to them before they agree to participate.

For participants with very limited English proficiency, you should always translate the study materials or work with an interpreter so they have all the information in their first language.

In research with children, you’ll often need informed permission for their participation from their parents or guardians. Although children cannot give informed consent, it’s best to also ask for their assent (agreement) to participate, depending on their age and maturity level.

Anonymity means that you don’t know who the participants are and you can’t link any individual participant to their data.

You can only guarantee anonymity by not collecting any personally identifying information – for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, and videos.

In many cases, it may be impossible to truly anonymise data collection. For example, data collected in person or by phone cannot be considered fully anonymous because some personal identifiers (demographic information or phone numbers) are impossible to hide.

You’ll also need to collect some identifying information if you give your participants the option to withdraw their data at a later stage.

Data pseudonymisation is an alternative method where you replace identifying information about participants with pseudonymous, or fake, identifiers. The data can still be linked to participants, but it’s harder to do so because you separate personal information from the study data.

Confidentiality means that you know who the participants are, but you remove all identifying information from your report.

All participants have a right to privacy, so you should protect their personal data for as long as you store or use it. Even when you can’t collect data anonymously, you should secure confidentiality whenever you can.

Some research designs aren’t conducive to confidentiality, but it’s important to make all attempts and inform participants of the risks involved.

As a researcher, you have to consider all possible sources of harm to participants. Harm can come in many different forms.

• Psychological harm: Sensitive questions or tasks may trigger negative emotions such as shame or anxiety.
• Social harm: Participation can involve social risks, public embarrassment, or stigma.
• Physical harm: Pain or injury can result from the study procedures.
• Legal harm: Reporting sensitive data could lead to legal risks or a breach of privacy.

It’s best to consider every possible source of harm in your study, as well as concrete ways to mitigate them. Involve your supervisor to discuss steps for harm reduction.

Make sure to disclose all possible risks of harm to participants before the study to get informed consent. If there is a risk of harm, prepare to provide participants with resources, counselling, or medical services if needed.

Some of these questions may bring up negative emotions, so you inform participants about the sensitive nature of the survey and assure them that their responses will be confidential.

The way you communicate your research results can sometimes involve ethical issues. Good science communication is honest, reliable, and credible. It’s best to make your results as transparent as possible.

Take steps to actively avoid plagiarism and research misconduct wherever possible.

Plagiarism means submitting others’ works as your own. Although it can be unintentional, copying someone else’s work without proper credit amounts to stealing. It’s an ethical problem in research communication because you may benefit by harming other researchers.

Self-plagiarism is when you republish or re-submit parts of your own papers or reports without properly citing your original work.

This is problematic because you may benefit from presenting your ideas as new and original even though they’ve already been published elsewhere in the past. You may also be infringing on your previous publisher’s copyright, violating an ethical code, or wasting time and resources by doing so.

In extreme cases of self-plagiarism, entire datasets or papers are sometimes duplicated. These are major ethical violations because they can skew research findings if taken as original data.

You notice that two published studies have similar characteristics even though they are from different years. Their sample sizes, locations, treatments, and results are highly similar, and the studies share one author in common.

Research misconduct

Research misconduct means making up or falsifying data, manipulating data analyses, or misrepresenting results in research reports. It’s a form of academic fraud.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement about data analyses.

Research misconduct is a serious ethical issue because it can undermine scientific integrity and institutional credibility. It leads to a waste of funding and resources that could have been used for alternative research.

Later investigations revealed that they fabricated and manipulated their data to show a nonexistent link between vaccines and autism. Wakefield also neglected to disclose important conflicts of interest, and his medical license was taken away.

This fraudulent work sparked vaccine hesitancy among parents and caregivers. The rate of MMR vaccinations in children fell sharply, and measles outbreaks became more common due to a lack of herd immunity.

Research scandals with ethical failures are littered throughout history, but some took place not that long ago.

Some scientists in positions of power have historically mistreated or even abused research participants to investigate research problems at any cost. These participants were prisoners, under their care, or otherwise trusted them to treat them with dignity.

To demonstrate the importance of research ethics, we’ll briefly review two research studies that violated human rights in modern history.

These experiments were inhumane and resulted in trauma, permanent disabilities, or death in many cases.

After some Nazi doctors were put on trial for their crimes, the Nuremberg Code of research ethics for human experimentation was developed in 1947 to establish a new standard for human experimentation in medical research.

In reality, the actual goal was to study the effects of the disease when left untreated, and the researchers never informed participants about their diagnoses or the research aims.

Although participants experienced severe health problems, including blindness and other complications, the researchers only pretended to provide medical care.

When treatment became possible in 1943, 11 years after the study began, none of the participants were offered it, despite their health conditions and high risk of death.

Ethical failures like these resulted in severe harm to participants, wasted resources, and lower trust in science and scientists. This is why all research institutions have strict ethical guidelines for performing research.

Ethical considerations in research are a set of principles that guide your research designs and practices. These principles include voluntary participation, informed consent, anonymity, confidentiality, potential for harm, and results communication.

Scientists and researchers must always adhere to a certain code of conduct when collecting data from others .

These considerations protect the rights of research participants, enhance research validity , and maintain scientific integrity.

Research ethics matter for scientific integrity, human rights and dignity, and collaboration between science and society. These principles make sure that participation in studies is voluntary, informed, and safe.

Anonymity means you don’t know who the participants are, while confidentiality means you know who they are but remove identifying information from your research report. Both are important ethical considerations .

You can only guarantee anonymity by not collecting any personally identifying information – for example, names, phone numbers, email addresses, IP addresses, physical characteristics, photos, or videos.

You can keep data confidential by using aggregate information in your research report, so that you only refer to groups of participants rather than individuals.

These actions are committed intentionally and can have serious consequences; research misconduct is not a simple mistake or a point of disagreement but a serious ethical failure.

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The Ultimate Guide to Qualitative Research - Part 1: The Basics

• Introduction and overview
• What is qualitative research?
• What is qualitative data?
• Examples of qualitative data
• Qualitative vs. quantitative research
• Mixed methods
• Qualitative research preparation
• Theoretical perspective
• Theoretical framework
• Literature reviews
• Research question
• Conceptual framework
• Conceptual vs. theoretical framework
• Data collection
• Qualitative research methods
• Focus groups
• Observational research
• Case studies
• Ethnographical research
• Introduction

What are research ethics?

Informed consent in qualitative research, trust in the researcher-participant relationship, navigating the ethics review board.

• Confidentiality and privacy
• Power dynamics
• Reflexivity

Ethical considerations in qualitative research

Qualitative research often involves the researcher working with and collecting data from people. This raises critical ethical concerns that all qualitative researchers should keep in mind. This article will discuss the topic of informed consent , but other issues of privacy, confidentiality , and trust, among other considerations, also require careful consideration.

Ethics generally refer to the principles of right and wrong that guide an individual or a group. In the context of research, ethics are the standards and guidelines that dictate acceptable conduct during the research process, ensuring that researchers act in a manner that protects the rights, dignity, and welfare of the participants involved.

In qualitative research , the importance of ethics becomes more nuanced due to the deeply personal and subjective nature of the methods used. Qualitative researchers often engage in prolonged, intimate interactions with participants and immerse themselves in the participants' settings, sometimes even their lives. As such, the potential for ethical dilemmas or conflicts can be heightened, making a comprehensive understanding of ethics crucial for qualitative researchers.

What are the ethical considerations in qualitative research?

A critical aspect of research ethics is respect for persons. This principle emphasizes recognizing and respecting the autonomy of research participants, acknowledging their capacity to make decisions about their involvement in the research. It also involves providing special protection for individuals with diminished autonomy who may be vulnerable to coercion or undue influence, such as children, prisoners, or individuals with cognitive impairments.

Beneficence, another key ethical principle, is about maximizing potential benefits for the research participants and minimizing potential harm. In the qualitative research context, potential benefits might include contributing to new knowledge, enhancing understanding of a phenomenon, or informing policy or practice changes. Potential harm might involve psychological distress, invasion of privacy, stigmatization, or misuse of data.

Justice, a third core principle, involves ensuring a fair distribution of the benefits and burdens of research. This means carefully considering the selection of participants to avoid exploiting vulnerable groups or excluding others without justification.

Lastly, qualitative researchers also need to consider the principle of fidelity, which involves being honest and transparent, fulfilling promises, and establishing and maintaining trust with participants. These principles are not meant to be exhaustive, nor are they universally applicable without consideration of context. In fact, one of the complexities of qualitative research is that ethical considerations often have to be balanced and negotiated in light of the specific circumstances of each study. What's ethical in one study might not be in another, and this underpins the importance of researchers being reflective and responsive to the ethical dimensions of their work.

Why do research ethics matter?

It's important to note that ethics in qualitative research are not merely about compliance with formal ethical guidelines or approval from ethics review boards. While these are necessary, ethics in qualitative research go beyond this, requiring researchers to continually negotiate ethical issues throughout the entire research process, from design to dissemination . Understanding and adhering to ethical principles in qualitative research not only protects the participants but also enhances the quality of the research, as it encourages thoughtful and respectful engagement with the research process and its stakeholders. It is a fundamental part of responsible and credible research practice.

Informed consent is a cornerstone of ethical research practice. In practice, consent is such a necessary practice that universities and national institutes often require it to be outlined in the research proposal before ethical approval is granted. At the same time, journals often prohibit the publication of research findings if consent is not obtained. Consent is not merely the act of simply getting a participant to sign a form. It involves a clear and detailed understanding on the part of both the researcher and research subject regarding the nature of the research and how it is to be conducted. This section will discuss the importance of informed consent, the process of obtaining it, and the challenges and strategies involved in ensuring its proper implementation.

What is informed consent?

Informed consent is the process by which a research participant voluntarily confirms their willingness to participate in a particular study after having been informed of all aspects of the research that are relevant to their decision. It is a fundamental ethical obligation for all researchers, grounded in the principle of respect for persons, which recognizes the rights of individuals to autonomy and self-determination.

Importance of informed consent

Informed consent ensures that participants are not coerced or deceived into participating in a study. It upholds the principles of autonomy and respect for persons by recognizing and affirming the right of individuals to control what happens to them. Additionally, consent helps protect the researcher and the institution conducting the research by providing evidence that participants have voluntarily agreed to participate and understand the nature of the research and how the researcher intends to conduct research.

As a matter of medical research and biomedical research, consent is an outright necessity where people's health and welfare are concerned. The World Medical Association Declaration of Helsinki requires research participants to be treated with respect and given opportunities to make informed decisions. The principles outlined in the Helsinki Declaration prevent unscrupulous researchers and practitioners from preying on research subjects, no matter how beneficial the research aims might be.

Process of obtaining informed consent

The process of obtaining consent involves several key steps. First, researchers must provide potential participants with clear, detailed, and understandable information about the study. This includes information about the purpose of the research, what participation will involve, the potential benefits and risks, the safeguards that will be in place to protect confidentiality , the voluntary nature of participation, and the participant's right to withdraw at any time without penalty.

Once this information has been provided, researchers should give potential participants sufficient time to consider whether they wish to participate and ask the researcher any questions if they need further clarification. Researchers should then obtain explicit confirmation from participants that they have understood the information and agree to participate. This can be done verbally with an audio recording, but it is typically documented in a written consent form that the participant signs. It is important to save the documents and/or audio recordings as proof of having obtained consent (e.g., research review boards or academic journals may ask for such proof).

Challenges and strategies in ensuring consent

Obtaining consent in qualitative research can present several challenges. For instance, the iterative nature of many qualitative research designs means that the specifics of the research may evolve over time, making it difficult to provide complete information at the outset. Moreover, certain participant groups may have difficulty understanding the consent information due to language barriers, low literacy levels, or cognitive impairments.

In response to these challenges, researchers can adopt several strategies. For evolving research designs, researchers can commit to a process of ongoing consent, where they continually update participants about changes and check their continued willingness to participate.

For participant groups with comprehension difficulties, researchers can use simplified language, visual aids, or third-party intermediaries to help explain the consent information. In some cases, researchers may also need to seek consent from legally authorized representatives while still involving the participants as much as possible in the consent process.

Despite its challenges, researchers must make every effort to ensure that participants understand the research and voluntarily agree to take part. This not only respects participants' rights but also contributes to the overall quality and credibility of the research.

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Privacy and confidentiality in qualitative research

In qualitative research, ensuring privacy and confidentiality is paramount. As researchers frequently deal with sensitive data about individuals, it's crucial to respect and protect participants' rights to privacy and ensure the confidentiality of their information. This section will detail the concepts of privacy and confidentiality, the methods to maintain them, and the associated challenges in qualitative research.

Understanding privacy and confidentiality

Privacy and confidentiality, although related, are two distinct concepts in research ethics. Privacy pertains to an individual's right to control the extent, timing, and circumstances of sharing oneself with others. It is linked to notions of personal space and seclusion.

On the other hand, confidentiality relates to the agreement between the participant and the researcher about how the participant's information will be handled, used, and disseminated. It involves an assurance that personal information shared for the purposes of the research will not be disclosed in a way that allows the identification of the participant without their permission.

Methods for maintaining privacy and confidentiality

Several methods can be employed to maintain privacy and confidentiality in qualitative research. During data collection , privacy can be respected by conducting interviews or observations in private settings where the participant feels comfortable and by asking only questions that are necessary for the research.

Personal identifiers can be removed or disguised in transcripts, reports, and publications to ensure confidentiality. Data can be securely stored, and access can be limited to only the necessary members of the research team. Additionally, researchers can use pseudonyms instead of real names in their reports to further ensure that participants cannot be identified.

In certain situations, a technique called data aggregation can be employed. This involves presenting data in a way that represents groups of people rather than individuals, thus minimizing the risk of identification.

Challenges in ensuring privacy and confidentiality

Despite these methods, ensuring privacy and confidentiality can present challenges. Given the depth and detail often involved in qualitative data, even when identifiers are removed or disguised, participants may still be recognizable based on the context or content of their information.

There's also a potential conflict between maintaining confidentiality and providing rich, detailed descriptions, which is a hallmark of qualitative research . Furthermore, in small or close-knit communities, anonymity can be particularly challenging to maintain, as participants might be identifiable simply based on the nature of their experiences or roles.

In response to these challenges, it's important for researchers to have open and ongoing discussions with participants about privacy and confidentiality issues. They should negotiate what information is off-limits and continuously seek consent as more personal or sensitive data emerges. Researchers need to strike a balance between providing a rich, detailed account of the data and protecting their participants' identities.

The establishment of trust in the researcher-participant relationship is a fundamental aspect of qualitative research. Trust can influence the quality and depth of the data gathered, as participants are more likely to share honest and detailed information if they trust the researcher.

The importance of trust in qualitative research

Trust is foundational to successful qualitative research. Researchers often delve into personal, sometimes sensitive, topics. As a result, the participants' willingness to share depends largely on the level of trust established between them and the researcher. Trust can enhance participant engagement and willingness to participate, which can, in turn, enrich the quality of the data gathered. Moreover, the ethical integrity of the research process is often judged by the degree of trust that participants place in researchers.

Strategies to build and maintain trust

Building and maintaining trust with research subjects requires careful attention and ongoing effort. The process typically begins with clear, transparent communication about the research purpose, procedures, benefits, and risks, which can foster initial trust.

A key strategy for building trust is demonstrating respect for participants and their experiences. This includes honoring their time, listening carefully to their responses, and validating their experiences and feelings. Showing empathy and understanding can also enhance trust, particularly when discussing sensitive topics.

Additionally, maintaining confidentiality , as discussed in the previous section, is crucial for building and maintaining trust. If participants are confident that their information will be kept confidential, they are more likely to trust the researcher and share openly.

Ensuring that the research benefits the participants or their community in some way can also contribute to trust. This could include producing knowledge that addresses a community concern, providing a platform for participants' voices to be heard, or translating research findings into actions or interventions that benefit the participants.

Consequences of trust violation

Violations of trust can have severe consequences in qualitative research . Participants may withdraw from the study, refuse to provide further information, or provide false or misleading information. Trust violations can also harm the reputation of the researcher and their institution, impede future research efforts, and, in some cases, could lead to formal complaints or legal action.

Thus, it's essential for researchers to be aware of the importance of trust and make conscious efforts to build and maintain it throughout the research process. By doing so, they can foster more meaningful and productive relationships with their participants, leading to richer data and more impactful research findings.

Vulnerability and power dynamics in qualitative research

In qualitative research, it is crucial to recognize and address the potential vulnerability of participants and the power dynamics that exist between researchers and participants. These issues are at the heart of many ethical considerations in research.

Vulnerable populations in qualitative research

Vulnerable populations in research refer to groups of individuals who may be at a higher risk of exploitation or harm due to certain characteristics or circumstances. These might include children, older adults, prisoners, people with cognitive or mental health impairments, people with low socio-economic status, or people experiencing homelessness, among others.

Vulnerable individuals may have limited autonomy, be less able to understand or consent to research participation, or be more susceptible to harm from the research. Researchers need to exercise particular care when including vulnerable individuals in research to ensure that they are not exploited and that their rights and welfare are protected. As a general rule, protecting the rights and agency of vulnerable groups takes priority over data collection.

Power dynamics between researchers and participants

Power dynamics in qualitative research refer to the imbalance of power that often exists between researchers and participants. Researchers usually hold a position of power in the research relationship, as they determine the research design, control the data collection and analysis process, and decide how the findings are reported. This power imbalance can influence participants' experiences and responses in the research and can potentially lead to exploitation or harm.

For instance, participants might feel pressured to participate in the research, to answer questions they are uncomfortable with, or to disclose more information than they would like, due to the perceived power of the researcher. They might also fear potential repercussions if they withdraw from the research or provide negative feedback.

Strategies for minimizing power imbalances

To minimize power imbalances, researchers can adopt several strategies. These can include involving participants in the research process, known as participatory research methods. For instance, researchers can involve participants in designing the research questions, selecting the methods, analyzing the data, or disseminating the findings .

Researchers can also aim for transparency in all research procedures, continually inform participants of their rights, and reinforce the voluntary nature of participation. It's also crucial to approach participants with respect and humility, acknowledging their expertise in their own experiences and valuing their contributions to the research.

Moreover, in the case of vulnerable populations, additional safeguards might be necessary. These could include obtaining consent from a legally authorized representative, using simplified language or visual aids to explain the research, ensuring that participation does not exacerbate the individuals' vulnerability, and providing additional support or resources as needed.

Institutional Review Boards (IRBs), or Ethics Review Boards, are formal ethics committees that review all research involving human subjects. The aim of these committees is to ensure that the proposed research studies adhere to ethical guidelines regarding human subjects protection. An ethics committee protects the rights, safety, and well-being of the participants in research. Navigating the review process can be complex, but understanding its purpose and procedures can help researchers to ensure their studies meet the necessary ethical standards.

Purpose of the ethics review board

The primary purpose of an ethics review board is to protect human subjects from potential harm. Boards review research proposals to ensure that the studies are designed and will be conducted ethically, respecting the principles of informed consent , confidentiality , and protection of vulnerable populations, among others. They also aim to ensure that the potential benefits of the research outweigh any risks to participants.

Getting ethical approval for your study

To prepare for a review from an institutional review board, researchers should familiarize themselves with the specific guidelines and procedures of their institution's review board. This usually involves developing a detailed research proposal that outlines the study's purpose, methods , participant recruitment, consent procedures, data handling practices, and measures to protect participants' rights and welfare.

Researchers should also prepare to address potential ethical issues that might arise in their study. This involves thinking through potential risks to participants, how these risks will be mitigated, and how any unexpected ethical issues will be handled.

The review process and responding to feedback

Once a research proposal is submitted to the ethics review board, it undergoes a process of review. The board members assess the proposal for potential ethical issues and decide whether to approve the study, request modifications, or reject the study. This process can take several weeks or months and may involve several rounds of feedback and revisions.

If the board requires modifications, researchers should carefully review the feedback, make the necessary changes to their proposal, and provide a clear rationale for these changes when resubmitting the proposal. It's important to view this process as a constructive dialogue aimed at enhancing the ethical quality of the research rather than a hurdle to overcome.

Conducting the study and post-study considerations

Once the study is approved, researchers should conduct the study as outlined in their approved proposal. Any significant changes to the study design or procedures should be reported to and approved by the review board.

After the study is completed, researchers may need to submit a final report to the review board, outlining how the study was conducted and how any ethical issues were handled. Researchers should also be prepared to address any ethical issues that arise during data analysis, reporting, or dissemination and may need to seek further guidance from the review board in these cases.

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Ethics in Qualitative Research: A Practical Guide

• Safary Wa-Mbaleka Adventist University of Africa

Qualitative research continues to grow around the world. More and more scholars and institutions of higher education continue to embrace it. Publications must continue to be on practical ways of conducting qualitative research in general and conducting it especially ethically. This paper is focused primarily on practical ways of enhancing ethical practices in qualitative research. While many qualitative research books and articles discuss ethical considerations, it is good to have a paper that synthesizes effective strategies to enhance ethics in a much more practical way. This paper goes from the definition of ethics to the importance of ethical practices and to the implementation of practical considerations before, during, and after data collection in qualitative research. This paper is not meant to be exhaustive; however, it should be a good guide for qualitative researchers who wish to avail of practical strategies for good ethical practices.

Author Biography

EdD, PhD Associate Professor, Adventist University of Africa Nairobi, Kenya

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A guide to ethical considerations in research

Last updated

12 March 2023

Reviewed by

Miroslav Damyanov

Whether you are conducting a survey, running focus groups , doing field research, or holding interviews, the chances are participants will be a part of the process.

Taking ethical considerations into account and following all obligations are essential when people are involved in your research. Upholding academic integrity is another crucial ethical concern in all research types. 

So, how can you protect your participants and ensure that your research is ethical? Let’s take a closer look at the ethical considerations in research and the best practices to follow.

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• The importance of ethical research

Research ethics are integral to all forms of research. They help protect participants’ rights, ensure that the research is valid and accurate, and help minimize any risk of harm during the process.

When people are involved in your research, it’s particularly important to consider whether your planned research method follows ethical practices.

You might ask questions such as:

Will our participants be protected?

Is there a risk of any harm?

Are we doing all we can to protect the personal data and information we collect?

Does our study include any bias?

How can we ensure that the results will be accurate and valid?

Will our research impact public safety?

Is there a more ethical way to complete the research?

Conducting research unethically and not protecting participants’ rights can have serious consequences. It can discredit the entire study. Human rights, dignity, and research integrity should all be front of mind when you are conducting research.

• How to conduct ethical research

Before kicking off any project, the entire team must be familiar with ethical best practices. These include the considerations below.

Voluntary participation

In an ethical study, all participants have chosen to be part of the research. They must have voluntarily opted in without any pressure or coercion to do so. They must be aware that they are part of a research study. Their information must not be used against their will. 

To ensure voluntary participation, make it clear at the outset that the person is opting into the process.

While participants may agree to be part of a study for a certain duration, they are allowed to change their minds. Participants must be free to leave or withdraw from the study at any time. They don’t need to give a reason.

Informed consent

Before kicking off any research, it’s also important to gain consent from all participants. This ensures participants are clear that they are part of a research study and understand all of the information related to it.

Gaining informed consent usually involves a written consent form—physical or digital—that participants can sign.

Best practice informed consent generally includes the following:

An explanation of what the study is

The duration of the study

The expectations of participants

Any potential risks

An explanation that participants are free to withdraw at any time

Contact information for the research supervisor

When obtaining informed consent, you should ensure that all parties truly understand what they are signing and their obligations as a participant. There should never be any coercion to sign.

Anonymity is key to ensuring that participants cannot be identified through their data. Personal information includes things like participants’ names, addresses, emails, phone numbers, characteristics, and photos.

However, making information truly anonymous can be challenging, especially if personal information is a necessary part of the research.

To maintain a degree of anonymity, avoid gathering any information you don’t need. This will minimize the risk of participants being identified.

Another useful tool is data pseudonymization, which makes it harder to directly link information to a real person. Data pseudonymization means giving participants fake names or mock information to protect their identity. You could, for example, replace participants’ names with codes.

Confidentiality

Keeping data confidential is a critical aspect of all forms of research. You should communicate to all participants that their information will be protected and then take active steps to ensure that happens.

Data protection has become a serious topic in recent years and should be taken seriously. The more information you gather, the more important it is to heavily protect that data.

There are many ways to protect data, including the following:

Restricted access: Information should only be accessible to the researchers involved in the project to limit the risk of breaches.

Password protection : Information should not be accessible without access via a password that complies with secure password guidelines.

Encrypted data: In this day and age, password protection isn’t usually sufficient. Encrypting the data can help ensure its security.

Data retention: All organizations should uphold a data retention policy whereby data gathered should only be held for a certain period of time. This minimizes the risk of breaches further down the line.

In research where participants are grouped together (such as in focus groups), ask participants not to pass on what has been discussed. This helps maintain the group’s privacy.

Data falsification

Regardless of what your study is about or whether it involves humans, it’s always unethical to falsify data or information. That means editing or changing any data that has been gathered or gathering data in ways that skew the results.

Bias in research is highly problematic and can significantly impact research integrity. Data falsification or misrepresentation can have serious consequences.

Take the case of Korean researcher Hwang Woo-suk, for example. Woo-suk, once considered a scientific leader in stem-cell research, was found guilty of fabricating experiments in the field and making ethical violations. Once discovered, he was fired from his role and sentenced to two years in prison.

All conflicts of interest should be declared at the outset to avoid any bias or risk of fabrication in the research process. Data must be collected and recorded accurately, and analysis must be completed impartially.

If conflicts do arise during the study, researchers may need to step back to maintain the study’s integrity. Outsourcing research to neutral third parties is necessary in some cases.

Potential for harm

Another consideration is the potential for harm. When completing research, it’s important to ensure that your participants will be safe throughout the study’s duration. 

Harm during research could occur in many forms.

Physical harm may occur if your participants are asked to perform a physical activity, or if they are involved in a medical study.

Psychological harm can occur if questions or activities involve triggering or sensitive topics, or if participants are asked to complete potentially embarrassing tasks.

Harm can be caused through a data breach or privacy concern.

A study can cause harm if the participants don’t feel comfortable with the study expectations or their supervisors.

Maintaining the physical and mental well-being of all participants throughout studies is an essential aspect of ethical research.

• Gaining ethical approval

Gaining ethical approval may be necessary before conducting some types of research. 

The US Department of Health and Human Services (HHS) and the US Food and Drug Administration (FDA) advise that approval is likely required for studies involving people.

To gain approval, it’s necessary to submit a proposal to an Institutional Review Board (IRB). The board will check the proposal and ensure that the research aligns with ethical practices. It will allow the project to proceed if it meets requirements.

Not gaining appropriate approval could invalidate your study, so it’s essential to pay attention to all local guidelines and laws.

• The dangers of unethical practices

Not maintaining ethical standards in research isn’t just questionable—it can be dangerous too. Many historical cases show just how widespread the ramifications can be.

The case of Korean researcher Hwang Woo-suk shows just how critical it is to obtain information ethically and accurately represent findings.

A case in 1998, which involved fraudulent data reporting, further proves this point.

The study, now debunked, was completed by Andrew Wakefield. It suggested there may be a link between the measles, mumps, and rubella (MMR) vaccine and autism in children. It was later found that the data was manipulated to show a causal link when there wasn’t one. Wakefield’s medical license was removed as a result, but the fraudulent study was still widely cited and continues to cause vaccine hesitancy among many parents.

Large organizational bodies have also been a part of unethical research. The alcohol industry, for example, was found to be highly influential in a major public health study in an attempt to prove that moderate alcohol consumption had health benefits. Five major alcohol companies pledged approximately $66 million to fund the study.

However, the World Health Organization (WHO) is clear that research shows there is no safe level of alcohol consumption. After pressure from many organizations, the study was eventually pulled due to biasing by the alcohol industry. Despite this, the idea that moderate alcohol consumption is better than abstaining may still appear in public discourse.

In more extreme cases, unethical research has led to medical studies being completed on people without their knowledge and against their will. The atrocities committed in Nazi Germany during World War II are an example.

Unethical practices in research are not just problematic or in conflict with academic integrity; they can seriously harm public health and safety.

• The ethical way to research

Considering ethical concerns and adopting best practices throughout studies is essential when conducting research.

When people are involved in studies, it’s important to consider their rights. They must not be coerced into participating, and they should be protected throughout the process.

Accurate reporting, unbiased results, and a genuine interest in answering questions rather than confirming assumptions are all essential aspects of ethical research.

Ethical research ultimately means producing true and valuable results for the benefit of everyone impacted by your study.

What are ethical considerations in research?

Ethical research involves a series of guidelines and considerations to ensure that the information gathered is valid and reliable. These guidelines ensure that:

People are not harmed during research

Participants have data protection and anonymity

Academic integrity is upheld

Not maintaining ethics in research can have serious consequences for those involved in the studies, the broader public, and policymakers.

What are the most common ethical considerations?

To maintain integrity and validity in research, all biases must be removed, data should be reported accurately, and studies must be clearly represented.

Some of the most common ethical guidelines when it comes to humans in research include avoiding harm, data protection, anonymity, informed consent, and confidentiality.

What are the ethical issues in secondary research?

Using secondary data is generally considered an ethical practice. That’s because the use of secondary data minimizes the impact on participants, reduces the need for additional funding, and maximizes the value of the data collection.

However, secondary research still has risks. For example, the risk of data breaches increases as more parties gain access to the information.

To minimize the risk, researchers should consider anonymity or data pseudonymization before the data is passed on. Furthermore, using the data should not cause any harm or distress to participants.

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Ethical considerations in research: Best practices and examples

To conduct responsible research, you’ve got to think about ethics. They protect participants’ rights and their well-being - and they ensure your findings are valid and reliable. This isn’t just a box for you to tick. It’s a crucial consideration that can make all the difference to the outcome of your research.

In this article, we'll explore the meaning and importance of research ethics in today's research landscape. You'll learn best practices to conduct ethical and impactful research.

Examples of ethical considerations in research

As a researcher, you're responsible for ethical research alongside your organization. Fulfilling ethical guidelines is critical. Organizations must ensure employees follow best practices to protect participants' rights and well-being.

Keep these things in mind when it comes to ethical considerations in research:

Voluntary participation

Voluntary participation is key. Nobody should feel like they're being forced to participate or pressured into doing anything they don't want to. That means giving people a choice and the ability to opt out at any time, even if they've already agreed to take part in the study.

Informed consent

Informed consent isn't just an ethical consideration. It's a legal requirement as well. Participants must fully understand what they're agreeing to, including potential risks and benefits.

The best way to go about this is by using a consent form. Make sure you include:

• A brief description of the study and research methods.
• The potential benefits and risks of participating.
• The length of the study.
• Contact information for the researcher and/or sponsor.
• Reiteration of the participant’s right to withdraw from the research project at any time without penalty.

Anonymity means that participants aren't identifiable in any way. This includes:

• Email address
• Photographs
• Video footage

You need a way to anonymize research data so that it can't be traced back to individual participants. This may involve creating a new digital ID for participants that can’t be linked back to their original identity using numerical codes.

Confidentiality

Information gathered during a study must be kept confidential. Confidentiality helps to protect the privacy of research participants. It also ensures that their information isn't disclosed to unauthorized individuals.

Some ways to ensure confidentiality include:

• Using a secure server to store data.
• Removing identifying information from databases that contain sensitive data.
• Using a third-party company to process and manage research participant data.
• Not keeping participant records for longer than necessary.
• Avoiding discussion of research findings in public forums.

Potential for harm

​​The potential for harm is a crucial factor in deciding whether a research study should proceed. It can manifest in various forms, such as:

• Psychological harm
• Social harm
• Physical harm

Conduct an ethical review to identify possible harms. Be prepared to explain how you’ll minimize these harms and what support is available in case they do happen.

Fair payment

One of the most crucial aspects of setting up a research study is deciding on fair compensation for your participants. Underpayment is a common ethical issue that shouldn't be overlooked. Properly rewarding participants' time is critical for boosting engagement and obtaining high-quality data. While Prolific requires a minimum payment of £6.00 / $8.00 per hour, there are other factors you need to consider when deciding on a fair payment.

First, check your institution's reimbursement guidelines to see if they already have a minimum or maximum hourly rate. You can also use the national minimum wage as a reference point.

Next, think about the amount of work you're asking participants to do. The level of effort required for a task, such as producing a video recording versus a short survey, should correspond with the reward offered.

You also need to consider the population you're targeting. To attract research subjects with specific characteristics or high-paying jobs, you may need to offer more as an incentive.

We recommend a minimum payment of £9.00 / $12.00 per hour, but we understand that payment rates can vary depending on a range of factors. Whatever payment you choose should reflect the amount of effort participants are required to put in and be fair to everyone involved.

Ethical research made easy with Prolific

At Prolific, we believe in making ethical research easy and accessible. The findings from the Fairwork Cloudwork report speak for themselves. Prolific was given the top score out of all competitors for minimum standards of fair work.

With over 25,000 researchers in our community, we're leading the way in revolutionizing the research industry. If you're interested in learning more about how we can support your research journey, sign up to get started now.

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Ethical Considerations

Ethical Considerations can be specified as one of the most important parts of the research. Dissertations may even be doomed to failure if this part is missing.

According to Bryman and Bell (2007) [1] the following ten points represent the most important principles related to ethical considerations in dissertations:

• Research participants should not be subjected to harm in any ways whatsoever.
• Respect for the dignity of research participants should be prioritised.
• Full consent should be obtained from the participants prior to the study.
• The protection of the privacy of research participants has to be ensured.
• Adequate level of confidentiality of the research data should be ensured.
• Anonymity of individuals and organisations participating in the research has to be ensured.
• Any deception or exaggeration about the aims and objectives of the research must be avoided.
• Affiliations in any forms, sources of funding, as well as any possible conflicts of interests have to be declared.
• Any type of communication in relation to the research should be done with honesty and transparency.
• Any type of misleading information, as well as representation of primary data findings in a biased way must be avoided.

In order to address ethical considerations aspect of your dissertation in an effective manner, you will need to expand discussions of each of the following points to at least one paragraph:

1. Voluntary participation of respondents in the research is important. Moreover, participants have rights to withdraw from the study at any stage if they wish to do so.

2. Respondents should participate on the basis of informed consent. The principle of informed consent involves researchers providing sufficient information and assurances about taking part to allow individuals to understand the implications of participation and to reach a fully informed, considered and freely given decision about whether or not to do so, without the exercise of any pressure or coercion. [2]

3. The use of offensive, discriminatory, or other unacceptable language needs to be avoided in the formulation of Questionnaire/Interview/Focus group questions.

4. Privacy and anonymity or respondents is of a paramount importance.

5. Acknowledgement of works of other authors used in any part of the dissertation with the use of Harvard/APA/Vancouver referencing system according to the Dissertation Handbook

6. Maintenance of the highest level of objectivity in discussions and analyses throughout the research

7. Adherence to Data Protection Act (1998) if you are studying in the UK

In studies that do not involve primary data collection, on the other hand, ethical issues are going to be limited to the points d) and e) above.

Most universities have their own Code of Ethical Practice. It is critically important for you to thoroughly adhere to this code in every aspect of your research and declare your adherence in ethical considerations part of your dissertation.

My e-book,  The Ultimate Guide to Writing a Dissertation in Business Studies: a step by step assistance  offers practical assistance to complete a dissertation with minimum or no stress. The e-book covers all stages of writing a dissertation starting from the selection to the research area to submitting the completed version of the work within the deadline. John Dudovskiy

[1] Bryman, A. &  Bell, E. (2007) “Business Research Methods”, 2nd edition. Oxford University Press.

[2] Saunders, M., Lewis, P. & Thornhill, A. (2012) “Research Methods for Business Students” 6th edition, Pearson Education Limited.

Research Design Review

A discussion of qualitative & quantitative research design, writing ethics into your qualitative proposal.

Every research proposal for studying human beings must carefully consider the ethical ramifications of engaging individuals for research purposes, and this is particularly true in the relatively intimate, in-depth nature of qualitative research. It is incumbent on qualitative researchers to honestly assure research participants their confidentiality and right to privacy, safety from harm, and right to terminate their voluntary participation at any time with no untoward repercussions from doing so. The proposal should describe the procedures that will be taken to implement these assurances, including gaining informed consent, gaining approval from the relevant Institutional Review Board, and anonymizing participants’ names, places mentioned, and other potentially identifying information.

Special consideration should be given in the proposal to ethical matters when the proposed research (a) pertains to vulnerable populations such as children or the elderly; (b) concerns a marginalized segment of the population such as people with disabilities, same-sex couples, or the economically disadvantaged; (c) involves covert observation that will be conducted in association with an ethnographic study; or (d) is a narrative study in which the researcher may withhold the full true intent of the research in order not to stifle or bias participants’ telling of their stories.

Furthermore, the researcher should pay particular attention to ethical considerations when writing a proposal for a focus group study. The focus group method (regardless of mode) brings together (typically) a number of strangers who are often asked to offer their candid thoughts on personal and sensitive topics. For this reason (and other reasons, e.g., the moderator may be sharing confidential information with the participants), it is important to gain a signed consent form from all participants; however, the reality is that there is no way the researcher can totally guarantee confidentiality. These and other associated ethical considerations should be discussed in the Design section of the focus group proposal.

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Great article! Ethical considerations become even more significant as we incorporate more and more technology.

• Pingback: Writing Ethics Into Your Qualitative Proposal | Managementpublic

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Reporting of Ethical Considerations in Qualitative Research Utilizing Social Media Data on Public Health Care: Scoping Review

Yujie zhang.

1 Nanfang Hospital, Southern Medical University, Guangzhou, China

2 School of Nursing, Southern Medical University, Guangzhou, China

Chuhan Zhong

Jianyao tang, wenqiong cao, associated data.

PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) checklist.

Search strategy for each database.

Summary of included literature.

All data extracted and analyzed during this study are presented in this paper and in the multimedia appendices.

The internet community has become a significant source for researchers to conduct qualitative studies analyzing users’ views, attitudes, and experiences about public health. However, few studies have assessed the ethical issues in qualitative research using social media data.

This study aims to review the reportage of ethical considerations in qualitative research utilizing social media data on public health care.

We performed a scoping review of studies mining text from internet communities and published in peer-reviewed journals from 2010 to May 31, 2023. These studies, limited to the English language, were retrieved to evaluate the rates of reporting ethical approval, informed consent, and privacy issues. We searched 5 databases, that is, PubMed, Web of Science, CINAHL, Cochrane, and Embase. Gray literature was supplemented from Google Scholar and OpenGrey websites. Studies using qualitative methods mining text from the internet community focusing on health care topics were deemed eligible. Data extraction was performed using a standardized data extraction spreadsheet. Findings were reported using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines.

After 4674 titles, abstracts, and full texts were screened, 108 studies on mining text from the internet community were included. Nearly half of the studies were published in the United States, with more studies from 2019 to 2022. Only 59.3% (64/108) of the studies sought ethical approval, 45.3% (49/108) mentioned informed consent, and only 12.9% (14/108) of the studies explicitly obtained informed consent. Approximately 86% (12/14) of the studies that reported informed consent obtained digital informed consent from participants/administrators, while 14% (2/14) did not describe the method used to obtain informed consent. Notably, 70.3% (76/108) of the studies contained users’ written content or posts: 68% (52/76) contained verbatim quotes, while 32% (24/76) paraphrased the quotes to prevent traceability. However, 16% (4/24) of the studies that paraphrased the quotes did not report the paraphrasing methods. Moreover, 18.5% (20/108) of the studies used aggregated data analysis to protect users’ privacy. Furthermore, the rates of reporting ethical approval were different between different countries ( P =.02) and between papers that contained users’ written content (both direct and paraphrased quotes) and papers that did not contain users’ written content ( P <.001).

Conclusions

Our scoping review demonstrates that the reporting of ethical considerations is widely neglected in qualitative research studies using social media data; such studies should be more cautious in citing user quotes to maintain user privacy. Further, our review reveals the need for detailed information on the precautions of obtaining informed consent and paraphrasing to reduce the potential bias. A national consensus of ethical considerations such as ethical approval, informed consent, and privacy issues is needed for qualitative research of health care using social media data of internet communities.

Introduction

Social media are web-based computer-mediated tools to collaborate, share, or exchange information, ideas, pictures, or videos in virtual communities and networks such as message boards, communities, chat rooms, forums, Twitter, and Facebook [ 1 ]. Moreover, patients and researchers can use internet communities to provide health care and disseminate health information [ 2 , 3 ]. Health care refers to the efforts made to improve or maintain physical, mental, or emotional well-being, including prevention, diagnosis, treatment, recovery, and other physical and mental impairments [ 4 ]. Currently, with 57% of the global population’s access to social media, more than 40% of the patients and caregivers worldwide utilize the internet community for health care information needs [ 5 ]. With diverse populations accessing internet communities and sharing information about health care topics, researchers have the opportunity to collect and analyze text about health care from a diverse range of participants in the internet community, which was unavailable previously [ 6 ]. Usually, quantitative data are derived from information extraction, which can be analyzed statistically, and the summary results presented cannot be directly linked to individual participants. In contrast, qualitative research within internet community analysis posts and comments qualitatively or thematically involves a more detailed and in-depth analysis and understanding of the full written content [ 7 ]. However, a controversial ethical problem has been raised about conducting qualitative research containing internet users’ verbatim quotes that could lead to traceability of the original post, thereby causing a threat to an individual’s privacy [ 8 ]. Additionally, a previous study investigated public and patients’ views regarding ethics in research using social media data and reported that internet users were aggrieved if they found any of their quotes cited in a medical research paper without obtaining their informed consent [ 9 ]. Further, besides the privacy breach caused by posts being traced, there is greater harm for special groups or vulnerable groups if we do not highlight the importance of the technical standards for text mining and privacy protection in health care. For instance, some unusual postings, abnormal pictures, and interactions that were expressed by individuals with mental disorders in social media can be detected by researchers by using text mining tools without obtaining their consent [ 10 ]. The publication of research on mental disorders, including quotes in posts, can result in a high risk of information harm, which can lead to personal information being revealed and further stigmatization of the condition or disease [ 11 ]. Since 2001, ethical concerns have been debated for decades about ethical approval, informed consent, and how to ensure anonymity and preserve data privacy and confidentiality in qualitative research in the internet community [ 12 - 14 ].

With the rapid development of social media and internet research, some ethical guidelines or standards have been published to ensure that research based on internet communities is conducted ethically. The Association of Internet Researchers (internet research ethical guidelines 2.0 and 3.0) showed that researchers working without the direct approval of ethics review boards would have additional challenges to face, and obtaining informed consent is obviously impracticable in several big data projects. However, with the ethical issues about privacy breaches and harms of risk of discrimination, the Association of Internet Researchers recommended reserving the acquisition of informed consent to the dissemination stage by asking for informed consent from specific participants before publication of their quotes [ 15 , 16 ]. Furthermore, researchers should take responsibility for information confidentiality and anonymity according to the internet research ethics criteria prepared by the National Committee for Research Ethics in the Social Sciences and the Humanities guidelines, which recommend a basic research ethic norm for the analyses, reports, and evaluations that apply to all research [ 17 ]. Moreover, the National Committee for Research Ethics in the Social Sciences and the Humanities guidelines contain more details about the demand for legal consent and privacy standards imposed by the European Union’s General Data Protection Regulation. The General Data Protection Regulation is a European Union–wide regulation targeting the project of personal data processing. The General Data Protection Regulation defines personal data as any information relating to an identifiable person (data subject), including name, online identification number, location data, and other factors related to personal, physical, physiological, mental, or social identity [ 18 ]. The General Data Protection Regulation recommends using anonymous data and deleting identifiable information to ensure the confidentiality of the data. Consent should be obtained from the individual for use in scientific research [ 18 , 19 ]. The British Psychological Society guideline does not explicitly refer to the internet community but suggests that researchers may consider paraphrasing the verbatim quotes to reduce the risk of being traced or identified in qualitative research [ 20 ]. When paraphrasing, steps must be put into place to ensure that the original meaning of the message is maintained. Currently, there is no widespread consensus on ethical considerations by social media researchers.

Some researchers have tried to explore the reporting of existing ethical considerations in research papers using social media data. For instance, Sinnenberg et al [ 6 ] reported that only 32% and 12% of the papers mentioned acquiring ethical approval and informed consent, respectively, by utilizing multiple analysis methods, including surveillance, intervention, recruitment, engagement, content analysis, and network analysis with Twitter data before 2015. Thereafter, Takats et al [ 21 ] conducted an updated examination based on Sinnenberg et al’s [ 6 ] study. They found that of 367 studies using different methodological approaches, including sentiment mining, surveillance, and thematic exploration of public health research using Twitter data between 2010 to 2019, 17% of the studies included verbatim tweets and identifiable information about the internet users [ 21 ]. Similarly, Lathan et al [ 22 ] reviewed papers, including both qualitative and quantitative methods, by using Facebook data to explore public health issues and reported that only 48% and 10% of the papers obtained ethical approval and informed consent, respectively. Furthermore, in a study on research using YouTube data or comments, Tanner et al [ 23 ] found that only 26.1% of these studies sought ethical approval, only 1 paper (0.08%) sought informed consent, and 27.7% contained identifiable information. These findings indicate widespread neglect of ethical issues such as ethical approval, informed consent, and privacy issues in research papers using social media data.

Our study focuses on the ethical challenges of qualitative studies utilizing social media data. First, social media can be considered as sources for qualitative data collection because of the low cost, vast amount of available sources about health information, and users’ health behaviors, experiences, and attitudes. Second, qualitative research is context-dependent and mainly contains quotations and written content to support the viewpoint. It is acknowledged that quote materials from social media would potentially be traced back to the original posts and threaten the users’ privacy [ 24 ]. This is supported by findings reported by Ayers et al [ 25 ] who found that online searches of verbatim Twitter quotes in journal papers described as “content analyses” or “coded Twitter postings” can be traced back to individual internet users 84% of the time. Furthermore, Lathan et al [ 22 ] identified that 46% of the studies with verbatim or paraphrased quotes could be traced to the original posts in 10 minutes. Therefore, it is essential to investigate the extent to which ethical oversight is reported in qualitative studies using social media data. Moreover, qualitative research often involves personally sensitive data about health conditions and diseases; hence, anonymity and proper deidentification would be more important for researchers [ 26 , 27 ].

Previous studies have reviewed the ethical challenges and methodological use of social media platforms such as Twitter [ 6 , 21 ], Facebook [ 22 ], and YouTube [ 23 ] for health care research in both qualitative and quantitative studies. Although there is plenty of qualitative data pouring into social media such as blogs, Twitter, Facebook, and Weibo, evidence is lacking on the investigation of ethical considerations targeting qualitative data in different software and web-based discussion forums to provide a more comprehensive understanding of the ethical issues. To address the ethical considerations in qualitative research of different internet communities and draw the attention of researchers and publishers to ethical issues, we conducted this study to evaluate the ethical practices and ethical considerations of qualitative studies on health care by using data of internet communities. This review aims to (1) assess the rates of reporting institutional review board (IRB) approval and informed consent in studies focused on mining text in the internet community and social media, (2) compare these rates according to the year of publication, country conducting the research, website included in the study’s analysis, and journal’s guidelines about ethical approval for the type of study, and (3) describe whether the studies used anonymized/deidentified data.

Research Design

We conducted a scoping review to investigate how qualitative research mining social media data handles ethical approval, informed consent, and confidential issues. We performed this study according to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines. The completed PRISMA-ScR checklist is provided in Multimedia Appendix 1 .

Search Strategy

All published qualitative studies from 2010 to March 31, 2023, focusing on mining text from online community and social media sources about health care in the following databases were included in this study: PubMed, Web of Science, CINAHL, Cochrane, and Embase. A standardized search string containing Medical Subject Headings (MeSH) and non-MeSH entry terms was used in the search strategy. In addition, the reference lists of the retrieved papers and citation tracking were manually searched as a supplement to database searches to improve comprehensiveness. Gray literature was also identified through internet searches in Google Scholar and OpenGrey websites. The search strategies are represented in Multimedia Appendix 2 .

Inclusion and Exclusion Criteria

We divided the criteria into 2 parts. First, we limited the inclusion and exclusion criteria used at the title and abstract screening stage eligible for (1) studies mining existing text and posts from the internet community and social media data focusing on health care topics, (2) studies using qualitative methods or available qualitative parts in mixed methods studies to analyze data, and (3) studies only written in English. Ineligible studies were those related to investigating the use and dissemination of social media in health care, using social media or internet community as an intervention tool, and using social media to conduct web-based interviews, surveys, or focus groups. We also excluded studies published as reviews, case studies, conference abstracts, commentaries, policies, guidelines, and recommendations. Second, at the full screening stage, the specific eligible inclusion criteria were studies focused on mining text about health care topics with full-text papers. Studies that did not have the full text after contacting the authors and that were not originally in the English language were excluded.

Study Selection

All results of the searches were entered into the EndNote library, and duplicates were removed. Two researchers reviewed the titles and abstracts based on the inclusion and exclusion criteria independently. Those studies that were irrelevant to the study topic were discarded, and then the full text was screened to select eligible papers. Any disagreements were discussed and resolved by consensus or a third person.

Data Extraction

Data were extracted between April 2023 and May 2023. Two researchers independently read the full text carefully, and the results were extracted using a standardized data extraction spreadsheet, including research type, first author, study objective, sample size, publication time, country where the research was conducted or country of the first author, website or internet community the studies focus on, type of data collected from social media, language of collected posts or data, privacy level of data (public or privacy posts), study design, research results, published journal, and information about the ethical considerations. Disagreements were resolved by consensus of a third person. The information about ethical considerations was analyzed to investigate the rates of reporting ethical approval, informed consent, and privacy issues: whether IRB review was reported (IRB approval, IRB exemption, unnecessary, not mentioned) and the reason for not requiring IRB approval; whether informed consent was obtained from participants or the websites’ administrators, consent types (digitally informed consent or written informed consent, informed consent is not required, consent was waived by IRB), and the methods used to obtain consent in each study; and whether quoting a post in papers could lead to the identification of internet users in each study. The description of users’ posts (verbatim quote, paraphrase) was recorded. We also analyzed if posts were paraphrased to maintain the original meaning, if actions were taken to deidentify the internet users, and if the posts contained other identifying information (ie, usernames, photos, links, hashtags) attached to the post. As every journal would provide publication ethical considerations and requirements, we also searched the submission guidelines and editorial policies of each journal submission website to check whether the journal contained any ethical guidance targeting studies using data from internet community and social media platforms. Additional information was included about the details of ethical approval, informed consent, and privacy, for example, whether individuals can withdraw their quotes if they want to be excluded from the study at any time without any reprisal and whether the quotations were tested for deidentification via search engines. There was excellent agreement on the primary outcome between the 2 researchers (k>.95 for all).

Data Analysis

Data were analyzed using SPSS software (IBM Corp). The chi-square test or Fisher exact tests (when cell size was less than 5) were used to test for differences between the rates of informed consent and ethical approval according to publication year, website, and different countries. All P values were 2-sided, and P values <.05 indicated significance.

Study Selection for the Review

We reviewed 4674 papers after removing the duplicates. After screening the titles, abstracts, and full-texts, we reviewed 108 eligible papers ( Figure 1 ). The full list of the included papers and all the extracted information are incorporated in Multimedia Appendix 3 [ 28 - 135 ]. Of the 108 studies reviewed, 73 (67.6%) were qualitative studies and 35 (32.4%) were mixed methods studies. All papers had text mined from internet communities or social media for qualitative analysis. The sample size ranged from 32 to 392,962. Approximately 82.4% (89/108) of the studies were published after 2018, and there was a sharp increase in the number of studies from 2019 to 2022. Moreover, nearly half of the studies (55/108, 50.9%) were published in the United States. Regarding the websites for mining text, the most widely used social media platform was Twitter (42/108, 38.9%), followed by Facebook (17/108, 15.7%).

PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) flow diagram of the study selection process.

Ethics Approval in These Studies

Our results indicated that of the 108 studies, 78 (72.2%) reported ethics approval. Of the 78 studies, 31 (40%) explicitly stated that ethics approval was obtained before the study was undertaken, 33 (42%) reported that the ethics approval was granted through exemptions by the local IRB, and 14 (18%) explicitly demonstrated that approval by the ethics committee was not required because publicly available data were collected from internet communities and social media platforms. However, 30 (27.8%) of the 108 studies did not mention about obtaining IRB approval ( Table 1 ).

Ethical considerations in the qualitative studies using data of the internet community.

Based on our exploration of the ethical guidelines of each journal to determine whether there were ethical requirements for studies mining social media data, only 36.1% (39/108) of the studies were published in journals that required ethical considerations for studies gathering data from social media platforms by using internet and digital technologies. Of the 39 studies published in 19 journals, 27 (69%) were published in the Journal of Medical Internet Research and its sister journals. The submission guidelines of the Journal of Medical Internet Research state that authors of manuscripts describing studies of internet, digital tools, and technologies are required to verify that they have adhered to local, national, regional, and international laws and regulations, and are required to verify that they complied with informed consent guidelines. Moreover, 2 journals also provided a specific requirement, that is, when researchers interact with individuals or obtain privacy information gathered from social media platforms, they should obtain ethics approval prior to conducting the study and informed consent from anyone who could potentially be identified. Surprisingly, there were no significant differences in the ethics approval reportage between journals with ethics approval guidelines and those that did not have ethics guidelines for researchers gathering data from social media platforms ( P =.08). Notably, the rates of reporting ethics approval were different between different countries ( P =.02). However, there were no statistically significant differences between the rates of reporting ethical approval and different websites or publication years (all P >.05) ( Table 2 ).

Reporting of ethical considerations in studies published in different publication years, countries, websites, and journals containing ethical requirements for research involving text mining and internet users’ written content.

Informed Consent

Of the 108 studies, 59 (54.7%) showed that they did not include any information about informed consent and 49 (45.3%) mentioned informed consent. Of the 49 studies that mentioned informed consent, 14 (13%) demonstrated that informed consent was waived by local institutional boards, and 21 (19%) reported that informed consent was not required because this information is publicly available in websites or did not involve human participants. We interpreted this as not seeking informed consent. Only 14 (12.9%) of the 108 studies explicitly indicated that informed consent was obtained ( Table 1 ). Among the 14 studies, 2 (14%) only provided a generic statement that informed consent was obtained but did not report the process of how the informed consent was obtained, while 12 (86%) received digital informed consent. Of the 12 studies that reported receiving digital informed consent, 6 reported that they sought permission from the communities’ or groups’ administrators and by posting a statement of the research objective on the group’s wall, while 5 studies contacted the participants privately via email, commenting below the posts and software to gain consent, and 1 study reported that it had sent a digital version of the informed consent book. Furthermore, among the studies that had obtained informed consent, 7 studies included the statement that the individuals’ posts would be removed if they wanted to be excluded from the study, and they could withdraw from the study whenever they wanted. In addition, the rates of reporting informed consent showed no statistical significance between publication years, different countries, and different websites (all P >.05) ( Table 2 ).

Confidentiality of the Information

All data sources were obtained from anonymous websites or communities, and the majority (104/108, 96.3%) of the data sources did not contain usernames. Notably, only 3.7% (4/108) of the studies contained the participants’ usernames or pseudonyms. One study reported that pseudonyms like Sasha had been used instead of the real name. The other 3 studies contained the expression for usernames but did not state whether pseudonyms were used. Except for 9 studies that used nonnative language quotes and 3 studies that were transcribed into text via video, among the 108 included studies, 76 (70.3%) quoted at least one native language post in their reports. Additionally, 20 studies presenting aggregated analysis or composite accounts did not include any quotation or written content. Of the 76 studies containing internet users’ written content, 52 (68%) contained just verbatim-quoted participants’ posts and 24 (32%) contained paraphrased posts ( Table 1 ). Among the 52 studies containing direct and verbatim quotations, which are likely to be traced to the original posts from users, only 17 (33%) studies took measures to deidentify the users. The 17 studies mentioned that all names or usernames were removed and personal identifying information was removed to maintain privacy, while 42% (22/52) of the studies did not mention any measures that were taken to deidentify the users and maintain confidentiality. Approximately 32% (24/76) of the studies described that they paraphrased posts and removed any explicitly identified personal information to maintain confidentiality to reduce the likelihood of users being identified via search engines. Of the 24 studies, 20 (83%) reported that the quotations were slightly modified or summarized for readability, the symbol information was removed using “…”, and key identifiable information was removed to protect privacy while maintaining the meaning of posts. Four of the 24 (17%) studies did not report the methods and details of paraphrasing. Notably, only 3% (2/76) of the studies containing users’ written content showed that researchers intentionally entered each quote into search engines to ensure that every quote did not lead to the original posts. Moreover, of the 76 studies containing written content, 62 (82%) did not contain other types of identity information attached to the posts, while 14 (18%) included other identifying data (hashtags, emojis, geolocation, photos, links, screenshots) attached to the original posts for analysis ( Table 1 ). Of the 14 studies including other identifying information, 4 (29%) contained photos and screenshots associated with the website pages. Of the 52 studies that disclosed verbatim quotes and other identifiable information, 26 (46%) studies reported informed consent consideration, and only 8 (15%) obtained explicitly informed consent. Additionally, of the 77% (40/52) of the studies that mentioned IRB or ethical review, 38% (15/40) received IRB approval, and 63% (25/40) of the studies were granted exemption. The proportion of reporting ethical approval in studies containing users’ written content was modestly higher than that in studies not containing users’ written content (60/76, 79% vs 14/32, 44%; P <.001) ( Table 2 ).

Principal Findings and Comparison to Prior Work

In this scoping review, we included 108 studies ( Multimedia Appendix 3 ; [ 28 - 135 ]) that focused on mining text from internet community and social media data for health care research, and we reviewed the ethical consideration reportage and outcome reports in these studies. We found that the rates of reporting IRB approval and informed consent in qualitative research on health care utilizing social media data were 59.3% (64/108) and 12.9% (14/108), respectively. Our findings demonstrate that the key ethical considerations for qualitative research in online communities are insufficiently discussed and described. However, the reporting rates of ethical considerations in the papers in our scoping review were much higher than those reported in systematic reviews including multiple analysis methodologies on only 1 social media platform. For example, ethics approval and informed consent were reported in 48% and 10% of research studies using only Facebook data [ 22 ], 32% and 0% from 2006 to 2019 [ 21 ], 40% and 0.9% (only 1 paper) from 2015 to 2016 in public health research using only Twitter data [ 25 ], and 26.1% and 0.8% (only 1 paper) in researches incorporating only YouTube data [ 23 ], respectively. In fact, previous studies were limited to only a few selected websites such as Twitter, Facebook, and YouTube. There is a lack of research that incorporates a variety of different social media data for comparisons. Differences in the reporting of ethical considerations may be attributed to the different methodologies adopted by studies. For example, Lathan et al [ 22 ] analyzed the ethical considerations in studies including predictive or model development, while our research focuses on the ethical considerations in qualitative studies.

Importantly, our findings indicate that there is a need to develop a standardized and apparent approach for the reporting of ethical considerations in qualitative research of data from social media and online communities. Our research demonstrates that the rates of reporting ethics approval are different in different countries ( P =.02). Specifically, a wide variety of national research ethics governing bodies and over 1000 laws, regulations, and standards provide oversight for human subjects research in 130 countries. Obviously, a guideline is needed for best ethical practices for qualitative research involving posts from social media platforms. Surprisingly, there were no significant differences between the rates of reporting ethical approval and those of journals specifying ethical requirements for studies involving text mining ( P =.08). This inconsistent result of publication guidelines and reports of ethical approval consent is similar to previous findings on the ethical standards in COVID-19 human studies [ 136 ]. Although there are journal publication guidelines for studies mining social media data, the reports of ethical approval and consent in the papers published in such journals do not exactly follow the guidelines. Consequently, this finding indicates that more ethical awareness is needed among researchers, editors, and reviewers for qualitative studies on data mining.

Besides the different legal and regulations in different countries, the inconsistency in the ethics approval in published papers may be because social media research is a highly interdisciplinary science, and computer science researchers may be less experienced or may pay less attention to the key ethical issues of protecting human subjects [ 137 ]. Medical and health science researchers may have considered some ethical concerns about gathering social media data but they may not be familiar with the relevant guidelines. For example, the Association of Internet Researchers has a detailed ethical guideline targeting social scientists conducting digital research, while it may be less popular and less well-known among medical and health care researchers. At the institute level, Ferretti et al [ 138 ] noticed that institutionalized review committees, especially the individual IRB institutes for universities and health care systems lack knowledge about the methodology, text mining technical standards, data security, and ethical harms for studies using big data and social media as sources. Because of this lack of knowledge, institutional ethics committees may have inconsistent ethical criteria and perspectives about web-based projects using social media data [ 139 ]. Therefore, some ethics review committees exclude research on internet communities from ethical oversights because their ethics standards are confined only to medical fields. Above all, it is additionally challenging for ethical approval institutions because of the continuous development and dynamic change of studies using social media data. Furthermore, it is necessary for ethics committee members to be trained about the ethical issues in studies mining text from social media. Inviting interdisciplinary researchers to join in the approval process would be an appropriate method to increase the awareness of ethical considerations [ 140 , 141 ].

Interestingly, the reporting rate of obtaining informed consent for mining social media data in qualitative studies was unexpected. The most influential ethical reports such as the Nuremberg Code [ 142 ], Declaration of Helsinki [ 143 ], and the Belmont Report [ 144 ] have demonstrated the principle of informed consent in research involving humans. Our review shows that only 12.9% (14/108) of the studies explicitly obtained informed consent and 32.4% (35/108) of the studies reported that informed consent was exempted by IRB or was not required, as the information was available publicly in websites or did not involve human participants. Our results are similar to those of Wongkoblap et al [ 145 ] who reported that only 16.7% of the studies received informed consent from participants prior to data analysis on data mining of social network data on mental health disorders.

There are multiple reasons for the challenges in obtaining informed consent in an internet setting. First, it is impractical for researchers to gain individual informed consent from a large number of users in an internet community [ 146 ]. Second, members of ethics review boards lack consensus about the need for informed consent from an internet community for qualitative research under the current legal definition [ 147 ]. Moreover, there has been a debate on the criteria of human subject research in using social media data. The federal regulation recommends that if data in the studies are obtained from public social media websites, where data are identifiable and do not require interaction with individuals, such studies do not constitute human subject research, while studies involving the identification of private information or interaction with the individual can be considered as human subject research [ 148 ]. In contrast, some researchers believe that social media and big data research are not ethically exceptional and should be treated in the same manner and with the same rules as those for traditional forms of research [ 149 ]. There is ambiguity as to what is appropriate or should be standard practice for obtaining informed consent.

Currently, it is challenging to maintain privacy and protect the traceability of individuals posting content in the internet community. Our findings indicated that 70.3% (76/108) of the studies contained internet users’ written content, of which 68% (52/76) included verbatim quotations of users’ posts that could lead to identification, and 18% (14/76) of the studies included other identifiable information such as links, screenshots, and emojis linked to original posts, which are similar to the findings of Ayers et al [ 25 ] and Lathan et al [ 22 ]. Usha Lawrance et al [ 150 ] and Wilkinson and Thelwall [ 151 ] argued that using direct quotes to support findings would lead to the identification of users and breach users’ confidentiality in internet community data. Moreover, quoting social media posts or disclosing usernames violate the International Committee of Medical Journal Editors’ ethics standards, which state that identifying information such as written descriptions and photos should not be published unless the information is essential for scientific purposes and the participants give written informed consent for publication [ 152 ]. Furthermore, our study demonstrates that the proportion of studies containing users’ written content (both direct and paraphrased quotations) is higher than that of studies that do not include any quotation or written content (60/76, 79% vs 14/32, 44%; P <.001)——a tentative explanation is that some researchers realized that ethical reportage should be stricter for qualitative papers with quotations from social media posts due to privacy and security issues. This is supported by Boyd and Crawford [ 153 ] who stated that rigorous thinking about the process of mining and anonymizing big data is required for ethics boards to ensure that people are protected. Our findings show that 32% (24/76) of the studies intentionally paraphrased the quotes to ensure that users could not locate them, and 20 studies used aggregated data interconnected with anonymity. Moreover, it is recommended by Wilkinson and Thelwall [ 151 ], Bond et al [ 154 ], and Markham et al [ 155 ] that researchers should not directly quote and work with aggregate data sets and separate texts from their original context, which is more acceptable to participants. In addition, the British Psychological Society guidelines recommend that researchers consider paraphrasing any verbatim quotes to reduce the risk of these being traced to the source [ 20 ]. Notably, 13 of the 25 papers in this study showed that they did not report the precautions taken for paraphrasing. This may be due to the lack of detailed methodology and consensus about paraphrasing quotes to reduce bias and maintaining the original meaning.

Limitations and Strengths

Our scoping review has several limitations. First, our research was limited to qualitative studies and the qualitative parts in mixed methods studies on text mining from social media, and it is unclear whether ethical considerations are critical in quantitative studies among internet communities. Second, we were restricted to studies published in English language and those with the full text available, and therefore, we could be underestimating the number of relevant papers published in other languages. Third, the rates of reporting ethical approval, informed consent, and privacy of this research relied on self-reported data. Thus, it is possible that although certain studies did not report the process of ethical considerations, such considerations may have been followed during the research. Conversely, some studies may have mentioned about the ethical considerations but may not have conducted them in practice. Hence, there is a bias because of the lack of accurate documentation that must be considered.

Social media text mining can be a useful tool for researchers to understand patient experiences of health conditions and health care. However, as illustrated by the absence of ethical discourse in publications, our analysis indicates significant gaps in the ethical considerations and governance of qualitative research of internet posts. Therefore, a complete and consistent consensus guideline of ethical considerations in qualitative research of internet posts is needed to protect users’ data. With the continued advancing development of text-mining techniques, qualitative studies mining text from social media should be more cautious while using user quotations to maintain user privacy and protect the traceability of the internet users posting content. We suggest that authors should report their results by using aggregated findings or deidentified ways like paraphrasing instead of verbatim quotations, which can prevent internet users from being identified through search engines. In addition, authors should provide more detailed information about the precautions taken for obtaining informed consent and paraphrasing to reduce the potential bias. Furthermore, journals and editors should pay more attention to the reporting standards of ethical consideration and privacy issues in qualitative research involving social media data.

Acknowledgments

This project was funded by the National Natural Science Foundation of China (72304131) and the Outstanding Youths Development Scheme of Nanfang Hospital, Southern Medical University (2023J005). The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of this manuscript. We sincerely thank the funders of this study.

Abbreviations

Multimedia Appendix 1

Multimedia appendix 2, multimedia appendix 3, data availability.

Authors' Contributions: YW was responsible for the protocol of the research and redrafted the paper critically. YZ and JF performed literature searches. YZ, JL, and WC performed study identification and screening. ZG, SD, CZ, and JT extracted and analyzed the data from the included journals. YZ and JL wrote the first draft of the paper. All authors read and approved the final manuscript.

Conflicts of Interest: None declared.