December 4, 2022

Research carries risks, so participants should be protected and supported as much as possible. Credit: bangoland/Shutterstock

Scientific research is not always abstract or theoretical. Nor does it take place in a vacuum. Research in many different disciplines is often based on the real world; it aims to understand and address issues that affect people and the environment, such as climate change, poverty, migration or natural disasters.

This means that researchers often have to interact with and collect data from a wide range of different people in government, business and civil society. These are known as research participants.

Over the past 50 years, the relationship between researcher and participant fundamentally changed. Previously, research participants were only seen as subjects of study. They had little input into the research process or its outcomes. Now participants are increasingly seen as collaborative partners and co-creators of knowledge. There are also many ways where they can talk to researchers. This shift has been driven largely by the need for research relevant to today’s world, as well as greater recognition of the diversity of people and cultures, and the Internet, social media and other means of communication.

In this context, ethical research practices are more important than ever. However, research ethics guidelines and standards vary by country and institution. Expectations can also differ between disciplines. So now is a good time to identify the main problems in human research ethics that transcend institutional or disciplinary differences.

Points of attention:

I have long chaired the research ethics committees of my institutions, and I provide research ethics training for researchers and managers in southern Africa. I have also published on research ethics. Based on this experience and drawing on other work done on the subjectI propose that there are five critical ethical issues for researchers to consider.

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Managing Vulnerability: Research participants, especially in developing countries, may be vulnerable to coercion, exploitation and the exercise of soft power.

This vulnerability can arise from systemic social, economic, political and cultural inequalities, which are particularly high in developing countries. And it can be exacerbated by inequalities in health care and education. Some groups in any society — including minors, people with disabilities, inmates, orphans, refugees, and those with stigmatized conditions such as HIV and AIDS or albinism — may be more vulnerable than others.

This issue can be managed by looking at the appearance of the participant group and ensuring that the data collection process does not augment existing vulnerabilities.

To obtain informed consent: This is an important condition for participation in any study. Potential participants should first be informed about the nature of the study and the conditions of their participation. That includes details about anonymity, confidentiality and their right of withdrawal.

The researcher must then ensure that the potential participant understands this information and has the opportunity to ask questions. This should be done in a language and with words that the person can understand. After these steps are taken, the participant can provide informed consent. Informal (oral or other non-written) consent is more appropriate if participants are illiterate or particularly vulnerable.

Protecting people: The overarching principle of protecting research participants was articulated in the milestone Belmont Report. The report emerged from a US national commission in the 1970s to consider ethical principles for research. It called on researchers in each study to demonstrate non-maleficence (the principle of doing no harm) and ensure they protect both the participants and their data.

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This can be done at various stages of the research process: by reducing the chance of risks or damage through a careful research design; by providing support or advice to participants during or after data collection; and by maintaining confidentiality and anonymity in data collection and reporting. Finally, personal data must be protected or anonymized if it is stored for later analysis.

Risk management: Potential sources of risk or harm to participants should be identified and mitigated, as far as possible, when designing the study. Risks can arise in any study, either at the time of data collection or afterwards. Sometimes this is unexpected, such as when data collection becomes more dangerous due to: social unrest or under COVID-19 restrictions.

It is important that researchers provide details of the support or counseling for participants in case they are needed. Any trade-off between risk and benefit can be considered through a risk-benefit analysis. But researchers need to be realistic about any benefits that could come from their research.

Standing up for human rights: Researchers have responsibilities: according to their disciplines, funders, institutions and participants. This means that they should not be purely passive analyzers of data. Instead, they should be positive role models in society by seeking solutions, advocating for change, and by upholding human rights and social justice in their actions.

Research activities, especially those involving participants, should address local and global problems and find solutions. They should lead to positive social and environmental results. This should be the context for all types of research activities in a 21st century world.

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Making it happen

Increasingly, there are national and international research ethics codes, which guide researchers in various fields. An example is the 2010 Singapore Declaration on Scientific Integrity. It emphasizes the principles of fairness, accountability, professional courtesy and fairness, and good data management. These are not only characteristics of ethical researchers, but also of good researchers.

These principles and processes should make research less risky and protect the rights of participants by building trust between researchers and participants. These principles can also help make research more transparent, accountable and equitable – crucial in an increasingly divided and unequal world.

Researchers propose framework for ethical research communication in the information age

Provided by The Conversation

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