Stanford Law School – 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 Mon, 28 Feb 2011 22:38:28 +0000 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.

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Ethics of prenatal genetic tests Mon, 28 Feb 2011 19:03:29 +0000 What could be an explosive ethical issue in genetic testing in the years ahead?

One possibility: prenatal genetic testing.

Hank Greely, the Deane F. and Kate Edelman Professor of Law at Stanford Law School, told the Presidential Commission for the Study of Bioethical Issues today that just 1 to 2 percent of pregnancies now involve prenatal genetic testing.

He said that could explode to more than 50 percent in coming years because of an emerging DNA test for genetic abnormalities taken only from a mother’s blood after the fifth week of pregnancy. Now, doctors use a needle to extract amniotic fluid found in the sac surrounding the developing fetus to test for abnormalities.

“There is a lot of fetal DNA to be had in the blood stream of the pregnant women,” Greely told the Commission, which is considering whether to launch a study on ethical issues surrounding genetic testing. “At the fifth week, 5 to 10 percent of a woman’s DNA is from the fetus, so we can do clinical testing of the fetus with that DNA from the mother’s blood.”

He said with such a non-invasive procedure of taking 10 millimeters of blood from a mother’s arm, “I would predict testing to go from 2 to 50 percent to maybe over 70 or 80 percent. We then would have big ethical issues around abortion, eugenics, and disability rights. There will be hard questions about what (testing) one should allow, such as whether it’s for serious diseases or non-serious diseases.”

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