Stem Cells: Many Willing Embryo Donors

As the debate over the use of human embryos in research continued with today's presidential veto of yet another stem-cell bill, a new survey of more than 1,000 infertility patients found that 60 percent were willing to donate their frozen embryos to stem-cell research. The study, conducted at Johns Hopkins University and Duke University and published in the journal Science, found that the couples were nearly three times more likely to donate their embryos for stem-cell research than for adoption. These donations could make an additional 80,000 to 100,000 embryos available to researchers, says coauthor of the study Ruth Faden. NEWSWEEK's Sarah Kliff spoke with Faden, director of the Johns Hopkins Berman Institute of Bioethics. Excerpts:

NEWSWEEK: Did these survey results surprise you?
Ruth Faden:
They were surprising and they weren't. If you look at the previously available estimate from the one national American study it's hugely surprising. The old data came from a 2003 survey of infertility clinics, but not the patients themselves. They estimated in 2003, that a little under 3 percent of frozen embryos were available for research. Our data, which came directly from infertility patients, suggests that indeed there may be as many as 50 to 60 percent who would like to donate embryos to stem-cell research. It's not so surprising because the data in other countries is more in line with our data.

What do these new findings mean?
The study suggests that the preferences of the infertility patients about embryo donation are very close to the attitudes of the American public about stem-cell research. Generally speaking, somewhere around 60 percent of the public supports embryonic stem-cell research. So you see that there is a concordance in terms of the level of support and interest. That's part of the big news. This study also adds a very relevant perspective, the perspective of infertility patients, that could have come out either way. A much smaller proportion [of infertility patients] could have said they are likely to donate to research. Instead we had a majority saying they're likely to donate. Now we have a third voice. We didn't know that before the study.

How important is it to hear directly from the potential donors?
In this, one of the most significant debates about the ethics of science of our time, we have not yet heard, in any major way, the moral standpoint of the people at the heart of this, the people who created these embryos and have moral and legal authority over them. We have policy makers, we have pro-life advocates, we have stem-cell research advocates, we have advocates from disease interest groups debating what it is ethical to do with cryopreserved embryos, but not the infertility patients. These embryos have very special and moral meaning for the people who create them. They are not just there in these banks disembodied. They belong to people. If we want to engage most deeply with what ought to be done, we need to know the preferences of the infertility patients whose embryos these are.

How do you explain the preference for stem-cell research over adoption by another couple?
In a companion qualitative study, we interviewed a smaller number of patients in depth. What was very interesting was getting an understanding of how they view the embryos that they have had cryo-preserved. They saw the embryos they created as emerging from their desire to have a baby. And they felt very strongly that if an embryo was ere permitted to become a child, they wanted to be and should be the parent. It's important, and I don't think we can overstate this, to understand that this big policy debate is also a very private, personal choice for a lot of individual patients. It's a policy debate for the nation but a private decision for many couples who actually have these embryos cryo-preserved.

How would you like to see your findings play out in the public policy arena?
They support the view that the current proposed [now vetoed] legislation is not only aligned with the majority view of the American public but also aligned with this important, morally relevant group. This provides additional support for the stem cell legislation and for how to think about the legislation. This will not change the view of people who hold the position that destroying embryos is immoral and never justifiable. That's a coherent position that these data cannot challenge. But for people who believe that there might be some circumstances in which early human life can be ethically destroyed to achieve another human end, this is important data.

What currently happens to the frozen embryos of infertile couples?
There are no national data about how many embryos are donated. There are data from the United Kingdom, where we know, for example, that over 3,000 embryos have been donated for research last year and about 230 were donated to other couples for adoption. We have no idea what the situation is in the United States because we keep no comparable records in this country.

Are infertility patients currently informed of their option to donate embryos to stem-cell research?
We don't know with what frequency the option is put forward. One of the reasons why these data are of such interest is that we have so little data from the U.S. ... We're hoping this work will not only bring attention to that third voice, but will also help make it easier for fertility patients to understand their options and easier for them what is for many a very difficult decision.