IRA FLATOW, host:
This is TALK OF THE NATION: SCIENCE FRIDAY. I'm Ira Flatow.
A bit later in the hour, we'll talk about energy policy and the future of coal.
But first, for the second time in less than a year, President Bush vetoed an embryonic stem cell bill passed by Congress. The bill would have given federal funding to scientists working on new embryonic stem cell lines. The president says his veto represents the ethical principles that America was founded on. But do Americans agree with this decision? New research published online yesterday by the journal Science suggests the White House is out of touch with the country. In the study, a survey of infertility patients found that over a half of the patients, 60 percent, said they would like to donate their unused frozen embryos to stem cell research.
Here to talk about the study is its lead author, Dr. Anne Lyerly. Dr. Lyerly is an associate professor of obstetrics and gynecology at Duke University in Durham, North Carolina. She's also spent time studying bioethics at both Johns Hopkins and Duke, focusing on women's medical issues. Welcome to the program, Dr. Lyerly.
Dr. ANNE DRAPKIN LYERLY (Associate Professor, Department of Obstetrics and Gynecology, Duke University): Thank you. I'm delighted to be here.
FLATOW: Tell us how you came about to do this survey.
Dr. LYERLY: Well, I started this work about six years ago when I was finishing up my work in bioethics at Johns Hopkins. And there were really two observations that made me want to do this. The first was that in my work with infertility doctors, what I learned was that their patients who had embryos remaining after treatment were oftentimes having a hard time figuring out what to do with these leftover embryos. It turned out that it was a difficult moral decision for them. It was actually these very same embryos that lawmakers and my colleagues in bioethics were debating about, and the perspectives of the people who were facing the very personal moral decision about what to do with these embryos were really absent from the debate.
FLATOW: See if you can…
Dr. LYERLY: So I wanted to learn.
FLATOW: Yeah, see - so tell us about this study and how you did it, what you learned.
Dr. LYERLY: Well, we started by just interviewing about 50 infertility patients, just to get a handle on the sorts of concerns they were having when thinking about their embryos, that we then developed a survey that was 12 pages long, which we validated by a number of methods. And then, I identified collaborators at nine infertility centers across the country who would be willing to participate in the study. And each of these sites randomly selected 300 patients to be sent the survey.
FLATOW: So you got over 1,200 patients in total?
Dr. LYERLY: Well, we sent it out to over 2,000, and we had a 60 percent response rate, so about 1,200.
FLATOW: Mm-hmm. And you asked them what? And they said that 60 percent - if I read the data correctly - 60 percent said they would donate their stem - their embryos to stem cell research.
Dr. LYERLY: Right. Well, we asked them, given the embryos you have stored right now, how likely would you be to donate them to research, donate them to stem cell research, thaw and discard them, or give them to another couple. And as you say, 50 percent said they would be likely to donate them to medical research. And then when we asked about specific kinds of research, including stem cell research, that number went up to 60 percent.
FLATOW: Mm-hmm. Is there any way to expand this to the - to the population in general? Or is this, basically, you're talking about people who've actually gone through this process?
Dr. LYERLY: Well, in our study, we tried to get a representative sample. They were geographically diverse and represented people who had had care both in big academic centers and big private centers and smaller centers. And so when we looked at these data, we did in our paper try to think about how if these were applied to the whole population of infertility patients, what that would mean in terms of potential embryos…
Dr. LYERLY: …available for stem cell research.
FLATOW: Mm-hmm. So your study, actually, then found a disconnect between what these patients actually want to do and what - what clinics and politicians are saying about what they want to do with it.
Dr. LYERLY: Well, there was a difference when - about three years ago, there was a study that said only three percent of the embryos that are currently stored are intended to be donated for research purposes. So our findings were surprising in that way that when we actually asked patients themselves what they wanted to do with the embryos, we could increase the estimates of the proportion that would be willing to donate embryos to research by at least a factor of 10. So there was a difference - sort of a disconnect between what clinics understood were the intentions for the embryos and what the patients themselves said.
And then, of course, there is also the disconnect between current public policy and the wishes of these patients. So their preferred option for disposition is donation for research, but this may not be an available option for them. And so they would have to either discard them or donate them to another couple hoping to have a baby.
FLATOW: So then, if all these people who said they would donate their embryos actually did donate their embryos, how many new stem cell lines might we have?
Dr. LYERLY: Well, we calculated that in our paper and our conservative estimate was that there would be between 2,000 and 3,000 embryonic stem cell lines available for research. As you know, currently, there's only 20 stem cell lines that are available for federal funds, and all of the currently available stem cell lines are felt to be contaminated. So they're not safe for therapy in humans.
But if new stem cell lines are developed, these problems would be avoided, we can presume. And so that not only could we increase the number of stem cell lines by a hundred times, but they would be useful for human therapies if we got to that point.
FLATOW: Mm-hmm. But I think most people believe that under the current regulation that the president has put into effect, patients are unable to donate any of their embryos.
Dr. LYERLY: Well, that is probably broadly suspected, but it's not completely true. There are - donation of embryos for research is legal in almost every state. It is just research using embryos. Research that destroys embryos and research using stem cell lines derived after 2001 is not available for federal funding. But there are some private and state funds that will fund this research, but it's excluded from anybody who's using federal funding.
FLATOW: So if you could donate your embryos to private research, you could still have them become useful?
Dr. LYERLY: Right.
FLATOW: Yeah. And is there any way from those embryos, then, to find their way from private to a laboratory, let's say, that has federal money?
Dr. LYERLY: Not right now. So laboratories that have federal money right now can only use the 20 cell lines that President Bush identified back in 2001.
Dr. LYERLY: So that is really essentially what the Embryonic Stem Cell Research Enhancement Act was aimed at doing, was if these stem cell lines are derived, then federal funding can be used for them.
FLATOW: Do you think this is going to come up in Congress again? We're going to have another go around with this?
Dr. LYERLY: Oh, certainly. Certainly it will.
FLATOW: When we might see that? Within months, within years, or what kind of time frame do you think?
Dr. LYERLY: Oh, my understanding is that they're working on the next thing right now. So I think we'll see it again soon.
FLATOW: Mm-hmm. And your survey - you sent out 2,000 questionnaires - did they go around the country with a certain demographics? Because we know, probably, certain people in certain parts of the country feel one way and others feel another way.
Dr. LYERLY: Well, probably. But, yeah, we had every major Census Bureau region represented. So I think it's fairly representative of the population of infertility patients. Although, you know, we didn't just randomly sample all of them, which is, of course, impossible because lists of people who have embryos in storage are not accessible to anybody and shouldn't be accessible to anybody, except their doctors.
FLATOW: Yeah. Yeah. Let me ask you this question - because we're running out of time - to find out why do you think the people with these embryos decided that scientific research is a good destination for them?
Dr. LYERLY: Well, I mean, I think one of the things that we learned both in our qualitative work and from this big survey was that many of the people who face these very personal decisions about reproduction reason in, perhaps, different ways than other folks do who don't have the same relationship with embryos. And so, it struck me that there's probably at least two reasons. One, certainly, is a belief that stem cell research is valuable and they've invested a lot in these embryos and they want them to be used for something good if they're not used for them to make babies with.
The other point is a little bit more of a subtle point. But what we also found was that only 22 percent of the people in the survey would be willing to donate their embryos to another couple. And when that number is broken down, only six percent would be very likely to donate their embryos to another couple.
What we heard when we had talked to folks before was less a worry about the moral concerns of, you know, destroying embryos, which have dominated the political debate. Is it ethically acceptable to destroy a human embryo? What we really heard from these people was moral concern about the embryos becoming children, but not raised by them, not within their homes, and their families, and with their love. And…
FLATOW: Well, I've got to say goodbye. We've run out of time. Thank you, Dr. Lyerly for taking that interview.
Dr. LYERLY: Well, thank you.
FLATOW: You're welcome.
Anne Lyerly, associate professor of obstetrics and gynecology at Duke University. We're going to take a short break, come back and talk more about energy. So stay with us, we'll be right back.
I'm Ira Flatow. This is TALK OF THE NATION: SCIENCE FRIDAY from NPR News.
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