Abstract
Deception in human subject research is neither uncommon nor prohibited. The use of deception in the recruitment phase of clinical research has received relatively little attention. Given that informed consent is foundational to human subject research, the practice of misrepresenting the study purpose in clinical research would seem to contradict one of the fundamental tenets of ethical human subjects research. Using the example of prodromal psychosis, this article the ethical and legal implications of deception in recruitment and the sufficiency of current guidance on the practice when the study involves a stigmatizing condition, the collection of genetic samples, or both. I conclude that when these two elements are present, deception should only be used when absolutely necessary and, if used, researchers should be required to debrief participants before the collection of genetic samples and give particular attention to minimizing risks of privacy breaches.
Acknowledgments
The author is particularly grateful to Lisa Parker for her valuable comments and suggestions. The author also extends special thanks to William Honer and Jehannine Austin for stimulating discussions and valuable comments.
This work was supported by CIHR/INMHA CNE-85117 (J. Illes, PI) and the Foundation for Ethics and Technology.