A Hobby of Hope
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August 1, 2007
Back in 2003, a national study was conducted to determine the degree of interest among IVF patients in donating their excess embryos for stem cell research. The result was both appalling and paltry at less than three percent.
New studies indicate differently.
Newsweek is reporting the results of a revamped version of that four year old study with a different slant. It turns out that back in 2003 the subjects of the surveys were personnel at IVF clinics. They were asked to estimate what their patients thought about donating excess embryos for research. But nobody, it seems, ever thought to ask the patients directly.
So, in this new and improved 2007 version, the IVF staffers were bypassed in favor of direct questioning of the patients – sort of moving from `one degree from Kevin Bacon' to actually talking to Bacon himself.
But, oh, what a difference when one gets the information directly from the source! Questioning patients directly revealed that 600 of the 1000 patients interviewed would gladly donate their excess embryos for stem cell research. Of the remaining 40% half preferred the option to offer them for adoption, with the balance preferring their destruction.
Ruth Faden, head of the Johns Hopkins Berman Institute of Bioethics teamed with Anne Lyerly of Duke University to conduct the study. Faden theorized that the embryonic stem cell lines that could be made available for research would increase the current federally authorized supply by more than 100 fold if only half the respondents who said they would donate actually did. Given the policies of the Bush administration, though, this means little in reality. Remember, federal funds available under this policy are limited to those lines in existence in 2001. So, even as new lines are created (as they have been since Bush announced his policy), expenditure of governmental funds to study them is still prohibited.
In a C-Span interview, Dr. Steven Teitelbaum, a physician-scientist at Washington University's pathology department, referenced yet a different study. It revealed that the problem is not finding potential donors, but rather, asking them to donate. The study demonstrated that when offered the opportunity, respondents vigorously supported the idea. A whopping 93% indicated that if asked, they would donate their excess embryos for stem cell research.
But is anyone asking?
I can speak for neither the research institutions nor the IVF clinics, but I discovered an answer to that question, which is a most pleasant surprise. With greater frequency, IVF patients are quietly taking matters into their own hands. They're seeking out researchers to whom, and programs to which, they can donate their excess embryos.
Last month I received an email forwarded to me from my friend Idelle Datlof, Executive Director of SCAN (the Stem Cell Action Network). The email traced back to a woman who had completed IVF treatment and was seeking to donate her excess embryos. Even more interestingly, for personal reasons she wanted any stem cell lines derived from her donation to be devoted solely to research on Multiple Sclerosis.
You can imagine my reaction to such a request. As they sang in the theme song to the movie, Ghostbusters: Who ya gonna call?
I remembered that Hans Keirstead began his renowned research seeking a method to re-myelinate the spinal column in MS patients. The work led to those now famous "Reed Rats" that had their severed spinal columns repaired with a treatment derived from embryonic stem cells.
So, "Who ya gonna call?" Why, Don Reed of course.
In the interest of journalistic integrity, I'm compelled to disclose that I didn't exactly call him. I just forwarded him the email with my own note added to the original. Later the same day I received a return email from Don. It read simply…
Thanks folks, I will call Ms. (name withheld for privacy).
Don
Just like that, lickety-split, an embryo donation to create stem cells was being arranged – and for research specific to a particular disease, to boot! I thought to myself that this age of the Internet is quite an extraordinary era in which to live and found myself marveling at how this had occurred.
But one man's marvel is another man's commonplace. During a follow up conversation with Don I was recalling how quickly he had responded to the request. He shrugged it off, informing me he's handled these requests several times before.
Now, I've known some pretty serious collectors of various items. For instance, I had an aunt who collected antique clocks. At her house, noon and midnight were particularly exhilarating, with over 50 different chimes and bongs and gongs sounding off, a veritable explosion of auditory chaotic order. My brother-in-law collects various currencies from places he's traveled around the world. Of course, that's not so unusual. I've known numerous numismatists and field of philatelists, but Don Reed is the first person I've ever known to `collect' excess embryos for donation to medical research.
What a wonderful hobby. A hobby of hope. And who knows how many lives it may save?
- Jeff Eisen
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