Inside Research Ethics
A DISCUSSION OFResearch Ethics From the Inside
Jim Ross’s article, “Research Ethics From the Inside” (Issues, Summer 2019), provides a good accounting of how institutional review boards (IRBs) work as well as some of the challenges they face. As a member of an IRB for nearly 10 years, I appreciate what he has done. However, I have to note that there continues to be a need to further explain to the lay public basically what an IRB is and why we have them. Without assurances that ethical procedures will be followed, confidence and trust in government-sponsored research will continue to erode.
Identity theft and misuse of data are problems that currently generate high levels of concern. Response rates to many government surveys are now at a level that would have been considered abysmal a couple decades ago. Respondents need assurances that personally identifiable information collected on them in any form of research will be kept private and held in strict confidentiality. IRBs have a responsibility to examine what data safeguards will be employed and how these will be explained to potential respondents or other research subjects within informed consent documents: in fact, this will receive increased attention from my IRB. This holds true for clinical research as well as surveys.
Accounts of the infamous Tuskeegee syphilis experiments conducted by the US Public Health Service on African American men, or the tale of how researchers took cells from the young black cancer patient Henrietta Lacks without her consent and created an “immortal” cell line now widely used in medicine, far too often simply end, with no explanation of the steps the government has taken to prevent such unethical activities from occurring today. These steps notably include adoption of the Federal Policy for Protection of Human Research Subjects, also known as the Common Rule, which defines the processes for IRB review and approval of research with human subjects. The public needs to know what IRBs are, why we have them, and what steps continue to be taken to ensure their rights as research subjects.
Member, Institutional Review Board for the National Center for Health Statistics at the US Centers for Disease Control and Prevention