The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Discussion Highlights from the Ethics of Incidental Findings

In a series of deliberations, the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) today addressed how incidental findings should be handled in the context of research, the clinic, and direct-to-consumer testing. What are the responsibilities of clinicians and researchers in seeking out and reporting incidental findings to patients? What are the responsibilities of direct-to-consumer industries in delivering results that might be sensitive to the consumer? The Members and speakers emphasized the responsibility of clinicians and researchers, and spoke of potential voluntary measures that the direct-to-consumer testing industry might take to deliver findings in an ethical manner. Discussion highlights included:

“Once you take up the ethical question of what you should do with incidental findings of the traditional sort, you, as a thinking human being, have to ask the question: what should our general rule or general practice be, since there are these incidental findings, should we ask the people who can find them to look for them, rather than stumble across them?” – Amy Gutmann, Ph.D., Chair of the Bioethics Commission, President of the University of Pennsylvania.

“Is a physician responsible for all things that a test could reveal? For example, if someone goes in for a chest x ray for bronchitis, is there a list of the 16 other things they could find, and is the radiologist required to check off all 16?” – James W. Wagner, Bioethics Commission Vice Chair, Present of Emory University.

“What does disclosure [of incidental findings resulting from research] itself entail? Should we be offering options of genetic counseling in some cases?” – Christine Grady, R.N., Ph.D. Chief of the Department of Bioethics at the National Institutes of Health.

“If this [direct-to-consumer testing] is a shot at a cheap entrée into medicine, it should be regulated as medicine, and we should extend physicians duties somehow to cover this new context” – Henry Richardson, J.D, M.P.P., Ph.D. Professor, Senior Research Scholar at the Kennedy Institute of Ethics, Georgetown University.

“It [direct-to-consumer testing] may be just what the consumer wanted to find out, but it is sensitive and may be surprising, and may need to be delivered in a particularly ethically sensitive way” – Anita Allen, Ph.D., J.D., Vice Provost for Faculty at the University of Pennsylvania and Henry R. Silverman Professor of Law and Professor of Philosophy.

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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