Time for the VA to Slow Down on Launching Their Biobank
For my ongoing follow up to my New York Times Magazine article: The Oregonian ran an editorial today saying that the Department of Veterans Affairs is about to launch a veterans' DNA bank without taking decades worth of patients rights debates into account or looking seriously at the well-known ethical issues involved in creating a bank like this (for more on these ethical issues, see my NY Times Magazine story). The VA wants to start collecting samples from veterans as early as this October -- it has an ethical advisory committee of 7 people with advanced degrees, an army dentist, and one disabled American Veteran. But it just signed them up last month. As the editorial says:I'm very interested to see how this one unfolds ...
"The committee has a lot to discuss in just a few months. Little questions such as: If genetic research detects a hidden, undesirable trait, such as a predilection for alcoholism, can that information be shared with third parties? Should it be disclosed to the donor?
When future researchers study a tissue or blood sample, should they be able to trace it back to its donor?If the agency sells a set of samples to a pharmaceutical company, which uses them to create a new drug, should donors be compensated?
Will donors really give informed consent to the use of their samples, since so much about the future research is unknown?
Can the Department of Veterans Affairs really guarantee privacy of the donors and security of the DNA specimens?
Many veterans have developed a healthy skepticism about the government that sent them to war. Those who have bumped into bureaucratic frustrations with the Department of Veterans Affairs -- and their names are legion -- are unlikely to believe that the same agency can effectively manage such a sensitive matter as DNA research ... a DNA repository of the blood and tissue of military veterans isn't something to be constructed hastily. The questions surrounding the matter are profoundly important, and the answers are by no means clear."
Labels: Bioethics: Use of Human Tissues, My Book
posted by Rebecca Skloot at 9:42 AM
1 Comments:
Rebecca,
Great meeting you and watching your presentation at ASJA last week. As I told a friend, you were like a blast of fresh air and a human caffeine machine. I'll be watching for your byline. And funny to see that you've recently blogged about the very book, New New Journalism, that I happened to mention to you at cocktail hour. I had the same reaction to it. Good luck with the book. I know it'll be read widely and closely, based on your other work.
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