Subject:   Lack of Effective Accountability in Research Deaths
Date:   2005-02-14
Additional Information is available on the CIRCARE web site at:   http://www.circare.org/foia3/ihgtdocs.htm

On February 9, 2005, the Department of Justice announced a civil settlement in its five year investigation into the death of my son, Jesse Gelsinger, in a gene transfer experiment at the University of Pennsylvania:

• http://www.usdoj.gov/usao/pae/News/Pr/2005/feb/UofPSettlement%20release.html

The news reports that have been issued do not go far enough in revealing the real nature of what went wrong in this very avoidable tragedy. We were asked several months ago by the Justice Department if we could support the proposed settlement. Our response was that we would support the settlement if we received the following from the responsible parties at the University of Pennsylvania and Children's National Medical Center:

• A public admission that their violations of the protocol and lack of adherence to the stopping rules directly resulted in Jesse's death.
• A public apology by all parties for causing Jesse's death and for their deception in the following months.
• Archiving all the documents related to the experiment so researchers and the media can try to learn what really happened.

We received none of what we asked for and therefore do not support this settlement. There will be no further legal action by the Justice Department in this matter, and the public should be dismayed that the responsible parties were let off so easily. In my conversations with the Justice Department it was evident that Justice does not have statutory authority to go after researchers for wrongful death or manslaughter charges. They are only able to pursue charges related to fraud. Congress needs to work on legislation that will give our national law enforcement agencies the authority they need to curb the type of behavior demonstrated by these researchers and their institutions.

CIRCARE, of which I am vice-president, has been dedicated to accountability in research and the passage of legislation that would make it safer for the public in its willingness to participate in clinical research. That effort has long been frustrated by the lobbying efforts of pharmaceutical and biotech companies, and even academia. Please help us to make clinical research safer by supporting CIRCARE's efforts.

Paul Gelsinger, Vice President, CIRCARE

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Last Updated: 2005-12-11

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