Complete video at: http://fora.tv/2008/11/02/Battle_of_Ideas_Whose_Data_Is_it_Anyway
Law professor Jeffrey Rosen explains the dangers of indexing genetic records and making them available electronically to law enforcement. Rosen believes the practice may lead to genetic surveillance and “suspicion-less searches” based on familial DNA, holding “children responsible for the sins of their fathers.”
Traditionally, we trust doctors with confidential information about our health in the knowledge that its in our own interests. Similarly, few patients object to the idea that such information may be used in some form for medical research. But what happens when this process is subject to scrutiny?
Clinical scientists and epidemiologists argue that the requirements being placed upon them are disproportionate to the use they are making of either datasets or tissues samples and, besides, their work is in the public interest.
At the heart of the debate lie key questions over trust and consent and how these can best be resolved. To complicate things, it is no longer just medical researchers, but also public health bureaucrats who are keen to have access to our data.
Are government researchers abusing patients’ trust? Can and should a distinction be made between the use of data for research and public health promotion purposes, or do the benefits of data-sharing outweigh its disadvantages? – Institute of Ideas
Jeffrey Rosen is a professor of law at George Washington University and the legal affairs editor of The New Republic. A widely read legal commentator, his most recent book is The Supreme Court: The Personalities and Rivalries that Defined America, a companion book to the PBS series on the Supreme Court. He is also the author of The Most Democratic Branch, The Naked Crowd, and The Unwanted Gaze. A graduate of Harvard College, Oxford University, and Yale Law School, he has been a staff writer for The New Yorker magazine, and his essays and commentaries have appeared in the New York Times Magazine and The Atlantic, as well as on National Public Radio.