SCS 224 Ethical Responsibilities and Professionalism Journal: the Haiti clean water study
You are an epidemiologist and you have just proposed a grant to a large government institution. After a few months of waiting, you discover that the government has accepted your proposal—this is the research offer of a lifetime. You will receive the entirety of your requested funds ($250,000) to run a three-year project examining the differences of rural homes’ and urban dwellings’ access to clean water sources in Haiti and its impacts to overall human health. During your final year of research, you realize that after your results are published, the study sites will be greatly impacted—people’s homes will be torn down and they will be forced to move from lands that are special to their culture. You know that getting access to clean water will eventually help their families survive, but the present generations will likely suffer the consequences of government relocation. What do you do?
Keep the following questions in mind: What is an institutional review board (IRB), and what is its purpose? Do you think it actually works? Why, or why not?
Prompt: Discuss the ethical dilemma and write a response in your journal. Consider the role of the IRB. What is an IRB? What is its purpose? Would the IRB protect everyone involved in your research? If so, how? Address these critical elements:
- Institutional review board
- Does the IRB work?
- Ethical dilemma
Households who shared health and water data
Families who may be relocated after publication
Children who would benefit from clean water
Model journal entry
Original example for study purposes (about 740 words). Journals are personal, so rewrite it in your own voice and add your course readings.
Institutional Review Board
An institutional review board (IRB) is a committee that reviews research involving human participants before it begins and while it continues. In the United States, IRBs operate under the federal Common Rule (45 CFR 46), which grew out of the Belmont Report’s three principles: respect for persons, beneficence and justice (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). An IRB must have at least five members with varied backgrounds, including at least one nonscientist and one member who is not affiliated with the institution (U.S. Department of Health and Human Services [HHS], 2018). Its purpose is to make sure that risks to participants are minimized and reasonable in relation to expected benefits, that participants are selected fairly, that informed consent is obtained and that privacy and confidentiality are protected. Because my study is federally funded and takes place in Haiti, it would also need approval from a local Haitian ethics committee, since international guidelines expect research to be reviewed in the country where it happens and to respond to that community’s needs (Council for International Organizations of Medical Sciences [CIOMS], 2016).
Does the IRB Work?
I believe the IRB works well for what it was designed to do, but it would not protect everyone in this situation. It is effective at protecting individual participants: it would require that the households I survey understand the study in Haitian Creole, that their participation is voluntary and that their names and health information are kept secure. These protections exist because of real abuses, such as the Tuskegee syphilis study, where Black men were deceived and denied treatment for decades.
However, the IRB has a blind spot that matters here. The Common Rule states that an IRB “should not consider possible long-range effects of applying knowledge gained in the research (e.g., the possible effects of the research on public policy)” as part of the research risks it reviews (HHS, 2018, §46.111(a)(2)). In other words, my IRB would protect people while they participate, but it is not required to consider what the government might do with my findings, such as tearing down homes. The relocated families, many of whom may never have been participants, fall outside its protection. The IRB also reviews the plan I submit at the beginning, so a risk that I discover in year three depends on me reporting it. For these reasons, I think the IRB is a necessary minimum, not a complete ethical safeguard.
The Ethical Dilemma
The dilemma is between two goods and two harms. Publishing my results could lead to clean water that saves lives in the long run, which supports beneficence. But it could also cause the forced removal of families from land that holds cultural meaning, which violates the principle of justice because the people who bear the burden are not the people who benefit. Not publishing, or hiding my results, would waste public money, break my obligation to my funder and deny future generations a healthier life.
I would not simply publish and walk away, and I would not bury the findings. First, I would report the new risk to my IRB and the Haitian ethics committee and ask for guidance, since researchers must report unanticipated problems. Second, I would meet with community leaders and residents to explain what I found and what might happen, respecting their right to know and to have a voice. Third, I would work with my funder and the government agency before publication to recommend water solutions that do not require relocation, such as protected wells, water kiosks or household filtration, and, if relocation cannot be avoided, to insist on fair compensation, consultation and nearby resettlement that keeps the community together. Fourth, I would write my publication carefully, reporting results by region rather than by identifiable village, and I would include the community’s concerns in my recommendations. Finally, I would partner with local organizations that can advocate for residents after my grant ends.
This scenario taught me that ethical responsibility does not end when the IRB approves a study. Researchers serve participants, communities and science at the same time, and when those interests conflict, the researcher must speak up, share power with the community and push for solutions that respect both health and culture. The most important lesson for me is that “doing no harm” must include harm that our findings may cause after the study ends.
References
Council for International Organizations of Medical Sciences. (2016). International ethical guidelines for health-related research involving humans (4th ed.). https://cioms.ch/publications/product/international-ethical-guidelines-for-health-related-research-involving-humans/
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. U.S. Department of Health, Education, and Welfare. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html
U.S. Department of Health and Human Services. (2018). Protection of human subjects, 45 C.F.R. pt. 46. https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-A/part-46
Make it yours: journal entries are graded on your reasoning. State your own decision clearly, explain why, and connect it to your SCS 224 readings, for example [course reading on research ethics].
Frequently asked questions
Why doesn’t the IRB consider the relocation risk?
The Common Rule tells IRBs not to treat long-range effects of applying research knowledge, such as effects on public policy, as research risks. That keeps reviews focused on participants but leaves community-level harms to the researcher’s own ethics.
Should the researcher refuse to publish?
Most ethicists would say no: suppressing results wastes public funds and denies the benefits. A stronger answer is to publish responsibly while working with the community and government to reduce harm.
Related reading: when IRB approval is needed.
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