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Stanford Q&A: Neuroethicist on growing demand for ethical oversight

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Stanford Medicine

Judy Illes to speak Feb. 18 at AAAS on key issues facing researchers probing consciousness, personality

New ways of peering into the brain raise ethical questions about how research involving these technologies should be conducted. Judy Illes, PhD, director of the Program in Neuroethics at the Stanford Center for Biomedical Ethics, will be discussing these ethical issues at the American Association for the Advancement of Science meeting in St. Louis on Feb. 18 in a session titled "Ethics of neuroscience: Lack of consciousness and assessment of personhood." Below she discusses some of the critical issues in her work.

Question. The field of neuroethics has taken off since you help found it in 2002. What made the timing right for the new field?

Illes: With incredible advances in neuroscience, especially neurotechnology, many things factored into making the timing right for neuroethics. For example, with new imaging technologies researchers are able to conduct experiments that have the potential to predict behavior, consciousness and pathology. These types of experiments raise ethical concerns about how to handle the sensitive data and how much individuals want to know - or want other people to know - about their mental state. For example, what if a scan revealed that a person has a tendency toward aggression or addiction? As the research moves closer to revealing these types of traits it became important for the entire field to consider the ethical implications of the work.

Q. You published a paper in Science on Feb. 10 about incidental findings in neuroimaging studies. What did you report in that paper?

Illes: I assembled a working group from the National Institutes of Health and a number of academic institutions around the United States and Canada on a phenomenon called "incidental findings" - anomalies found in the brains of people who are considered healthy controls in imaging studies. Many studies don't have protocols in place for whether they tell participants about these incidental findings, or even what do with them if they find them. In the Science paper we suggest that all imaging studies need to account for how the researchers will handle such findings. We also argue that the informed consent that participants sign must clearly state whether people will find out if their scan shows abnormalities, and the risks of having that information. For example, a finding might turn out to be clinically insignificant when followed up, but a participant may have a lot of anxiety waiting for that to happen.

Q. Do you think this paper will change how imaging studies are carried out?

Illes: I do. I think many more imaging researchers will begin taking into consideration incidental findings. Also, the institutional review board [a committee that must approve human research at institutions] will require the informed-consent procedure to be clear about how the researchers will handle incidental findings. My group is working on recommending language for study protocols and informed consent to help researchers handle incidental findings in their studies.

Q. You recently edited a neuroethics book. Who is the intended audience? What do you hope they gain from reading the book?

Illes: The book lays out the field of neuroethics for the medical practitioners, students of neuroscience, bioethics and related fields, and the lay public. I am hoping to spark active conversation about neuroethics in our society. Publication of the book is an exciting start. The message is that it's a whole new day in neuroscience research and medicine, and neuroethics needs to be there.

Q. Do you think the general public understands - or even needs to understand - the ethical issues raised by neuroimaging?

Illes: I think the public knows that modern neuroimaging research has produced the possibility of monitoring thought in ways you couldn't before. However, I don't think people understand the real promises and limitations of the research, and the extent to which it could be used to predict disease or personality traits, such as the tendency toward aggression or lying. The public needs to be involved in informed discussions of how this research proceeds and how that information will be used.

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Stanford University Medical Center integrates research, medical education and patient care at its three institutions - Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children's Hospital at Stanford. For more information, please visit the Web site of the medical center's Office of Communication & Public Affairs at http://mednews.stanford.edu.

Print media contact: Amy Adams at (650) 723-3900 (amyadams@stanford.edu) Broadcast media contact: M.A. Malone at (650) 723-6912 (mamalone@stanford.edu) Video of illes is available at: http://med.stanford.edu/five_questions/archive/illes.html


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