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

Some Key Questions on the Ethics of Incidental Findings

In a series of member discussions, the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) today wrapped up its discussion of how incidental findings should be handled in the context of research, the clinic, and direct-to-consumer testing.

During the discussion, several key bioethical questions arose that spoke to patient autonomy and the best practices of researchers, clinicians, and those in industry.

Among them was the question: If patients or research participants do not wish to learn about incidental findings, are there circumstances under which those conducting the testing can or should override their wishes? In the case of clinical findings, Amy Gutmann, Ph.D., Chair of the Bioethics Commission, and President of the University of Pennsylvania, brought up the Hippocratic Oath. In dire, life threatening cases, if the patient refuses to hear the incidental finding, the clinician may find it the ethical choice to cease treating that patient, as they cannot continue to treat while protecting that patient from harm.

If the findings themselves are not dire or life-threatening, there are pragmatic questions that also come in to play. For example, 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 and a member of the Bioethics Commission, raised the question of how clinical results might be hidden from patients, when they often have access to their electronic medical records.

In the case of research, Barbara Atkinson, M.D., noted that researchers could attempt to try to convince patients to hear the incidental findings if the findings were both life threatening and treatable, but that they do not have an obligation to override the patient’s wishes.

However, if patients and research participants do wish to learn about incidental findings, Gutmann noted that clinicians may feel limited in the time they feel they can commit to conveying findings which have no medical value to the patient. In these cases, the extra time or tests may not be cost effective, and patients may not have a right to order clinicians to take the time and effort.

“This is where direct-to-consumer testing hits its stride,” said Gutmann.  “You can pay out of your own pocket to get gobs of trivial information about yourself, and maybe you will stumble upon something that in the normal practice of medicine, it is too small of a probability to allow physicians to report…we ideally don’t want direct-to-consumer testing to be a substitute, but for it to be an add on for those who are intensely curious about everything about themselves.”

Finally, the Bioethics Commission discussed how the direct-to-consumer industry might develop voluntary best practices. While consumers are informed about what findings they will receive, Allen pointed out that these findings can be sensitive and surprising, and may need to be delivered in an ethically responsible way. Allen also noted that “the consumer might not see any difference between a doctor/patient practice and a completely direct-to-consumer industry. The two advertise in a similar way; education is needed to help people understand the varieties of ways in which they could receive health care today.”

The Bioethics Commission will be releasing a report with recommendations on incidental findings in research, the clinic, and direct-to-consumer testing later this year.

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About blog.Bioethics.gov

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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