We know that our DNA is uniquely ours, but do we really own our own genetic information? In biobanks across the country, researchers store millions of genetic samples taken from patients – sometimes without their knowledge – and there are no clear guidelines on how to deal with the tissues and findings.
What obligation do these researchers have to return samples – and any unexpected findings from the samples – to patients and their families?Susan Wolf, McKnight presidential professor of law, medicine and public policy at the University of Minnesota, has a report discussing 10 suggestions for biobanks and individual research findings. The paper will appear in Genetics in Medicine.
“The work we’re doing now focuses on whether researchers have any responsibility to offer back to research participants genetic findings that may have immediate, health affecting results,” she said. “It’s a terribly important issue – really it’s the biggest controversy in genetic research today.”
We are pleased to announce that Mildred Solomon, president-elect of The Hastings Center, will join the Bioethics Bootcamp as moderator of the keynote session, Why Bioethics Matters. Read more about Dr. Solomon here.
Don’t miss this opportunity to hear three Hastings Center presidents speak. Register now if you have not done so yet. We regret that we are unable to accept walk-in registrants.
Bioethics Bootcamp is nearly sold out — if you’re thinking about coming to this unique, popular, first-time event, now’s the time to register. No walk-ins are allowed. Pre-registration is required, so you can’t decide at the last minute. We hope to see you there.
We are pleased to announce speakers and moderator for the panel, Bioethics at the Bedside: Genetic Testing, Personalized Medicine, Organ Transplantation and More:
Alan Fleischman, Clinical Professor of Pediatrics and Clinical Professor of Epidemiology and Population Health, Albert Einstein College of Medicine
Robert Klitzman, Professor of Clinical Psychiatry and Director, Master’s of Bioethics Program, Columbia University
Moderator: Emily Laber-Warren, Director of the Health & Science Reporting Program, CUNY Graduate School of Journalism
Last week we shared a link to a story by Lisa Krieger, science and medicine reporter for the San Jose Mercury News, on the long and protracted death of her father and the high cost of end-of-life care. She spoke with Daniel Callahan, co-founder of the Hastings Institute, about his views on the cost of end-of-life care, and today Dr. Callahan posted an interview he conducted with Ms. Krieger:
While her father had made clear prior to his dementia that he wanted to die a “natural death,” what he got what he got was an unnatural “death by medicine,” as someone once put it. The total cost for the hospital stay alone was $323,000. Again and again Krieger had to make a decision about going on, as one crisis after another surfaced. With each new crisis, the doctors offered hope. There was, they said, “a decent chance we could turn it around.” They could not, and he finally died. But as the days moved along from one crisis after another, Krieger kept asking herself, Was it all worth it? “Should we have quit?” she wrote. And when?
I have come to think that the decisions about stopping life-sustaining treatments may have become harder, not easier, since the 1960s, when the reform movement was gaining momentum. Medicine has become increasingly skilled technologically in keeping the dying alive. Her father, Krieger noted, “thanks to modern medicine . . . lived decades longer than his father.” That same medicine gave him a miserable death. That is a dilemma of modern medicine we have yet to resolve.
“If we look at what’s coming down the road in technology,” said 81-year-old bioethicist Daniel Callahan of the Hastings Center, “we have to realize that this endless fight against aging can’t go on.
“What medicine provides is more and more ways to keep people going,” he said. “An extra few days, or a month — it is very, very hard for doctors and families to give that up.”
We’ve received some questions about our cancellation policy for the Bioethics Bootcamp. Once you’ve registered, you may request a full refund up to 21 days before event, a 50 percent refund up to 7 days before the event, and no refund thereafter.
In other words:
- cancellations by March 9 receive a full refund
- cancellations by March 23 receive a 50% refund
- no refunds after March 23
Amtrak just announced a sale on fares between NYC and DC or Baltimore. This sale lasts only three days, so book now:
Book your Amtrak tickets online now through February 2, 2012 for travel March 13 through April 4, 2012 and you’ll get access to two of our lowest one-way fares between:
Washington, DC and New York, NY – $40
Baltimore, MD and New York, NY – $36
We’ve officially opened registration for the March 30 event “Bioethics Bootcamp: Finding the Must-Read Angle for Science and Medical Stories.” Register before March 1 to take advantage of the early bird rates.
Be sure to check back here for updates about the program. We’re adding additional panel members, which will be announced here.
See you on then!