In a roundtable discussion, the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) today discussed how incidental findings should be handled in the context of research, the clinic, and direct-to-consumer testing. What are the responsibilities of researchers to act on incidental findings? What is the duty of a clinician to her patient, a researcher to his participant, or a company to its consumer? Some of these relationships seem to be blurring as businesses take on research and as clinicians enroll their patients in studies. The Commissioners and the speakers at the meeting also emphasized the humanity of the patients involved, and the need for compassion and personal autonomy in future decisions on this issue.
“I view my main role here as reminding you, despite being research centered, we are humans…not to forget to pay attention to that human side.” – Sarah Hilgenberg, M.D., F.A.A.P., Department of Pediatrics, Stanford University.
“These relationships don’t come with a platonic ideal of what these relationships are or are not, they evolve due to policies, cultural understanding.” – Amy Gutmann, Ph.D., Chair of the Bioethics Commission, President of the University of Pennsylvania.
“There is still a primary duty in each domain that is different: research’s duty is to discover new knowledge, the company’s duty is to its shareholders, and the clinician’s duty is to patients.” – Alex John London, M.A., Ph.D., Professor of Philosophy at Carnegie Mellon University.
“The way that the technology is proceeding is that it may be cheaper to do whole genome sequencing than one or two tests at a time. When all these results are obtained, they will become part of the clinical record. So it is not possible to try and withhold any information, there is a very important case to be made that in those circumstances [where] there may be no incidental findings.” – Raju Kucherlapati, Ph.D., Professor in the Harvard Medical School Department of Genetics.
“In a clinical setting, that may not be the time when you want to hear [that piece of information], you may wish to hear that information later…we built a system where nothing is incidental.” – Joanna Mountain, Ph.D., Senior Director of Research, 23andMe.
“Real autonomy starts with information, people knowing what their options are.” Robert C. Green, M.D., M.P.H., Associate Professor of Medicine at Harvard Medical School.