Dr. Ellen Wright Clayton – blog.Bioethics.gov https://bioethicsarchive.georgetown.edu/pcsbi/blog The blog of the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues Mon, 09 Jan 2017 23:23:29 +0000 en-US hourly 1 The chair’s request: A single good idea https://bioethicsarchive.georgetown.edu/pcsbi/blog/2011/02/28/the-chair%e2%80%99s-request-a-single-good-idea/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2011/02/28/the-chair%e2%80%99s-request-a-single-good-idea/#respond Mon, 28 Feb 2011 22:38:28 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=105 At the end of a long meeting today, Dr. Amy Gutmann, President of the University of Pennsylvania and Chair of the Presidential Commission for the Study of Bioethical Issues, had one question for a group of experts on the ethics of genetics testing and neuro-imaging:

“What could we most productively take on as a commission? Is there one specific issue you would like us to take up, or one set of facts that you think is very important? What would that be?’’

Some of the answers:

Hank Greely, Deane F. and Kate Edelman Johnson Professor of Law, Stanford Law School: “Research use of collective data, everything from consent to incidental findings.”

Dr. Erik Parens, Senior Research Scholar at The Hastings Center: How to handle an avalanche of information “that would help rather than harm people.”

Dr. James P. Evans, Clinical Professor and Bryson Distinguished Professor of Genetics and Medicine at the University of North Carolina School of Medicine: “Forensic issues. I think the questions regarding forensics, including the newer use of searching databases for cold hits, are exceptionally timely. Your input would be influential.”

Dr. Martha Farah, Walter H. Annenberg Professor in Natural Sciences at the University of Pennsylvania: “Attention to the pipeline through which new neuro-imaging applications are developed. Who is taking on the cost of doing it? Who is doing the research? How is that pipeline influenced by who owns and develops the technology, and how does that shape or distort what gets produced and what gets used?”

Dr. Adina Roskies, Associate Professor in the Department of Philosophy at Dartmouth College: “I’m in line with Martha. Also, better means of interpreting the data.”

Dr. Stephen Morse, Ferdinand Wakeman Hubbell Professor of Law at the University of Pennsylvania Law School & School of Medicine: “Mine is vaguer, more foundational: How the new neuroscience will undermine the notion of what it is to be a human being.”

Susan Wolf, McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota: “You’re not the Institute of Medicine, you’re not the National Academy of Sciences, what you do is public bioethics. One of the biggest issues is the question of the management of information. It’s going to be a total renegotiation of the line between research and clinical care.”

Dr. Ellen Wright Clayton, Director of the Center for Biomedical Ethics and Society at Vanderbilt University: “I also am concerned about management of data, but in a different way. In a clinical context, we are not going to be able to control access to data.”

The panel will reconvene on Tuesday morning. It has yet to decide whether to take up an inquiry on the ethics of genetic testing and neuro-imaging. Its focus on Tuesday will be a separate issue: the protection of human subjects in clinical trials overseas.

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2011/02/28/the-chair%e2%80%99s-request-a-single-good-idea/feed/ 0
Interpreting your genetics test results: No easy feat https://bioethicsarchive.georgetown.edu/pcsbi/blog/2011/02/28/interpreting-your-genetics-test-results-no-easy-feat/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2011/02/28/interpreting-your-genetics-test-results-no-easy-feat/#respond Mon, 28 Feb 2011 21:46:02 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=102 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.”

]]>
https://bioethicsarchive.georgetown.edu/pcsbi/blog/2011/02/28/interpreting-your-genetics-test-results-no-easy-feat/feed/ 0