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

Interpreting your genetics test results: No easy feat

Vanderbilt University recently asked its second-year medical students to take personal genetics testing through the company 23andMe in order to better understand how to counsel patients who take the test. Dr. Ellen Wright Clayton, the Director of the Center for Biomedical Ethics and Society at Vanderbilt, also decided to join in.

Clayton, a medical doctor, told the Presidential Commission for the Study of Bioethical Issues today that she knew how to interpret the results. But her experience underscored a concern whether others outside the medical field would be able to do so.

“I brought to bear everything I know about genetics to explain everything I would find worrisome,” she said. “But the fact is most people aren’t going to have that. There isn’t going to be a kindly genetics counselor to help you deal with this. The idea you are going to have anything even remotely like genetic counseling on this is illusory.”

Clayton raised one of several ethical issues surrounding genetics testing and neuro-imaging during a day-long public meeting in Washington. The panel, which serves as an advisory panel on bioethical issues to President Obama, convened a number of experts and will decide later whether to launch a study on either subject.

Clayton told the commission that she believed that genome testing will be part of clinical care in the near future and that it will start to be routinely done on newborns. She also said that limiting access to the information “will be difficult, if not impossible. Patients will have access to the information. This information will be out there.”

What are the challenges? She said that errors will be inevitable and that “the understanding of genomics is going to be incomplete. People will demand a follow up that is often not evidence-based, and not always ethically appropriate.”

Susan Wolf, the McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota, also told the panel that a “fire hose of information” was being generated by research in genetics and neuro-imaging. She said that research “routinely generates findings of clinical or reproductive importance.”

She said that she believes there is an emerging consensus that suggests researchers had an ethical duty to report “incidental findings” of participants to them.

But Clayton asked if health practitioners would be able to properly evaluate it.

In an interview after the session, she brought up her 23andMe results. She said one test result showed a heightened risk for one disease.

“I had one trait that showed a risk, but I knew that almost all my lifestyle factors were protective,” she said. “So I said, ‘Whatever.’ I was able to put it into context. It didn’t change anything except reinforce my willingness to do routine screening. But I’m concerned that others won’t have the enough information to put into context.”

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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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