Brian Schrag
Part I
One of the issues raised by these cases is the role of risk/benefit analysis in the Belmont Report and the Code of Federal Regulations human subject research. It is worth pointing out that European research guideline to not accept that consequentialist emphasis and place much more weight on the protection of human subjects. (Elgesem) So the issues raised in this case are to some extent created by the consequentialist considerations built into the U.S. guidelines. It is also worth remembering that federal guidelines are a minimalist ethical approach and nothing precludes using a more stringent moral standard. In this case I shall assume a more stringent standard and start from the assumption that serious harm to the subjects in this case cannot be justified by some generalized good to others.
In this case it is noted that gay men experience greater degrees of anxiety and depression than heterosexuals, in part because of stress resulting from experiences of discrimination. What we do not know from the case is the severity of such stress and its resultant anxiety and depression. If that level is already quite severe, then an experiment could increase that stress and the resultant anxiety and depression even more. If that is a fact, then it would suggest that the study in Part I ought not be done at all.
We also do not know what the range of risk is within the pool of subjects. If there is a range of levels of reaction to stress within the population to be studied and some are at a very high level of danger to exposure to such stress but others are not, then perhaps the very high risk persons should be removed from the potential pool of subjects to begin with. Something could be learned from the study, even if the study does not include very high risk subjects. A claim to be able to learn even more from the study if high risk subjects are included does not override the potential harm to high risk subjects.
One of the risks identified in the study is that the study will make the participants more aware of discrimination aimed at them and that hyper-vigilance about discrimination in turn may increase their level of depression/anxiety. Additionally, hyper-vigilance about the stress may itself compound problems of depression/anxiety. Making them sensitive to the actual level of discrimination they receive could be a mixed blessing. On the one hand if they are naively unaware of their environment, it may be important for them to have a realistic awareness of the discrimination to which they are subjected. On the other hand, there can be the harm of inflicted insight. By engaging in this experience, they are forced to see things that they really do not want to see.
There may be another risk of this experiment. It is possible that making subjects hyper-vigilant about discrimination may not only sensitize them to actual discrimination but also to condition them or habituate them to see discrimination where there is none, to distort their perception of reality. In some ways this may be a more serious harm. There is some value in having an accurate awareness of the challenges of being gay in a discriminatory environment, however painful that may be. But to acquire a distorted perception of the situation cannot be good.
Clearly, full disclosure of these risks will be important as the researcher solicits subjects for this research. It may be important to have trained counselors to help subjects fully understand the risks during the informed consent process and to work though their experience at the end of the study and, if any show signs of psychological problems worsened by the experience, the researcher has an obligation to provide the appropriate treatment. If there are insufficient funds in the study to provide such help, if needed, for problems caused by the study, then perhaps the experiment should not be done.
Part 2
If we already know that gay youth are at increased risk of suicide and if the study in Part I shows that that drawing more attention to the stress can increase the stress, then this study will likely increase the risk of suicide for young gay men in the study, particularly if they are not out to their parents, but perhaps otherwise as well. That suggests that the study should build in therapy support for all young subjects who may need it as a result of the study.
It is serious business to do research on young subjects without the knowledge or consent of parents. Imagine the harm if, as result of the study, a young man who is out to his family, committed suicide without the parents being aware that he was in the study. Imagine, what is worse, if he were not out to his family. It would be difficult to make out the case that the study was worth the cost to this family.
Perhaps the study should start by screening out any young gay men who show evidence of suicidal tendencies for whatever reasons and then screen out of the remaining population, all who are not out to their parents. The study population would be those out to their parents and at lower risk of suicide. Thus it would be possible to approach the parents of young gays in the study for permission without the possible repercussions noted for those not out and parents would be alerted to watch for any signs of suicidal tendencies as result of the study. If the study establishes there is still a greater tendency to suicide among this population, do we really need to study the population of those who are not out to parents?
Part 3
Apparently, there was no discussion regarding the right of the center to review the findings and approve the manuscript prior to publication, before its IRB board gave its approval for the study. It would have been good to have cleared that up before beginning the study. That does not solve the issue, however; it just pushes the issue back a step.
There are parallels here with collaborative research with Native American groups who also have their own IRB’s. In either case, it raises the issue of the possibility of inappropriate influence on the study findings. Imagine if an ultraconservative anti-gay group offered to completely fund the study but required that they give the manuscript approval before it could be published. We would think that an inappropriate conflict of interest and the same applies to the center.
Is it unethical for Brian to hide scientific findings if they do not turn out the way he wishes the results to turn out? Brian can choose to become a scientist or not; he can choose to do research in this area or not. But having chosen to be a research scientist and having chosen to do research in this area, then he needs to do the best science he can do and let the chips fall where they may. The very point of science is a search for truth about our physical world. To falsify results or to suppress results is to undermine the very fabric of science. If Brian is not interested in the pursuit of science, what would be the point of Brian being a scientist? Sissela Bok has written two classical works on the core value of truth telling and its value in the sciences as well as and the ethical issue of keeping secrets that are both worth considering in this general context. (Bok, 1999, 1989)
If it turns out that it is a healthy option for gays to stay in the closet, wouldn’t they like to know that? What sort of respect for persons is exhibited by denying them that knowledge? It seems to me that the subjects who may have been put at risk as subjects in the experiment deserve to have their efforts honored by publishing the truth of the findings. Finally, if any part of this study were financed by anyone besides Brian, it is an abuse of the use of those funds to suppress the results.
References
- Elgesem, Dag. “What is special about the ethical issues in online research?” Ethics and Information Technology, Volume 4, Number 3, 2002, pp. 195-203.
- Bok, Sissela. Lying: Moral Choice in Public and Private Life. Vintage, 1999.
- Bok, Sissela. Secrets: On the Ethics of Concealment and Revelation. Vintage, 1989.