The ethics of studying subjects in non-ideal circumstances
- Correspondence to Dr David Wendler, Department of Bioethics, NIH Clinical Center, Building 10, Room 1C118, Bethesda, Maryland 20892-1156, USA;
Contributors The views expressed are the author's own. They do not represent any position or policy of the NIH, DHHS or US Government.
Clinical investigators frequently study individuals who are in less than ideal circumstances. Oncologists study individuals with brain tumours; psychiatrists study individuals who have undergone traumatic experiences. There is little these investigators can do to improve the circumstances of their subjects, short of finding new treatments for the conditions that affect them. In other cases, investigators study individuals who are in less than ideal, but remediable circumstances. These studies press the question of when it is acceptable for investigators to study, rather than assist individuals.
The literature on this question has focused on clinical trials in which patients who do not have access to the best treatments are given placebos, or a second-best treatment.1 Research on the effects of secondhand smoke (SHS) similarly involves individuals who are in less than ideal, but potentially remediable circumstances. To assess the impact of SHS on sleep bruxism in children, Montaldo et al randomised parents who were known to smoke in the presence of their children into two groups. Parents in Group 1 were instructed to stop smoking in the presence of their children, whereas parents in Group 2 were instructed to not change their smoking habits.2
One might assume that clinical investigators may collect data only when doing so is consistent with protecting research subjects and promoting their clinical interests. This view suggests that research on individuals who are in less than ideal, but remediable circumstances, violates investigators' obligations. Rather than conduct a study in which patients who lack access to the best treatments are given placebos, researchers should give their subjects the best treatments available. Rather than study the effects of SHS, researchers should protect individuals from SHS. …