The blog of the Presidential Commission for the Study of Bioethical Issues

The chair’s request: A single good idea

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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3 Comments to The chair’s request: A single good idea

  1. April 18, 2011 at 9:35 am | Permalink

    Bioethical issues are very important, but should in no way be allowed to cloud good judgment and stunt the growth of scientific research which will in the long run do more good for society.

  2. August 12, 2011 at 3:07 pm | Permalink

    I am going to have to agree with Lilly, this is important but it should not turn into something that takes away from the point.

  3. December 13, 2011 at 11:59 pm | Permalink

    As one of your members, Susan Wolf, stated, the Commission’s business is “PUBLIC BIOETHICS.” Since that IS, or SUPPOSED to be the case, I think
    (as US Citizen, resident of Boulder, Colorado) that YOU can BEST serve the PUBLIC’S interest by examining the complaints of bio-violations submitted BY the PUBLIC, such as I will be contributing on December 19.

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This is a space for the members and staff of the 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.

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