POSITION: DIRECTOR, NATIONAL INSTITUTES OF HEALTH (NIH))

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1 POSITION: DIRECTOR, NATIONAL INSTITUTES OF HEALTH (NIH)) NOMINEE: Francis S. Collins BIRTHDATE: April 14, 1950 in Staunton, Virginia EDUCATION: B.S. in Chemistry, 1970, University of Virginia Ph.D. in Physical Chemistry, 1974, Yale University M.D. 1977, University of North Carolina at Chapel Hill FAMILY: wife Diane L. Baker; two daughters from previous marriage EXPERIENCE: 2009 Founded Biologos Foundation, to address the tension between religion and science 2007 Presidential Medal of Freedom for contributions to genetic research Published book The Language of God: A Scientist Presents Evidence for Belief Director of National Human Genome Research Institute (NHGRI) 1989 Identified gene for cystic fibrosis Faculty position at University of Michigan Fellow in Human Genetics at Yale Medical School Residency and Chief Residency in Internal Medicine, North Carolina Memorial Hospital, Chapel Hill Member of the Institute of Medicine and the National Academy of Sciences Physician volunteer in a rural missionary hospital in Nigeria Member of the Obama transition team ON GENETIC MANIPULATION OF HUMANS I would say the idea that we go in and begin to manipulate our own germ-line gene pool is something that, unless very, very strong argument can be brought forward to the benefit and the theological and philosophical positives, is something we shouldn't do. The notion that we could eventually take charge of our own evolutionary state and improve ourselves is a chilling one for most people, and especially, I think, for people of faith. The idea is that we would re-engineer the human race by deciding which features we would like to improve upon, such as making ourselves smarter and stronger. But who's going to decide what's an improvement? I think any kind of activity where we systematically change our very nature jeopardizes our relationship with God, who I believe was intent on creating humankind in our current state. The notion of altering DNA that's going to get passed to future generations, and is of uncertain consequence, does not measure up to most people's standards of ethical acceptability. It certainly doesn't measure up to mine Family Research Council Action 1

2 ON GENETIC PRIVACY and NONDISCRIMINATION It is a great pleasure for me to be standing here today, a day when Congress has finished its work on the Genetic Information Nondiscrimination Act (GINA) of 2008 and is sending it to the President for signature. This is a great gift to all Americans. It will make it safe for Americans to benefit from the medical results of the Human Genome Project, in which they invested so much. It will make it safe to have their genes examined without fear that they may be discriminated against in employment or health insurance. This is a great day. Finally, I want to thank President Bush, who has been a strong supporter of legislation to protect individuals from genetic discrimination for many years. When he came to visit NIH last year, he called on Congress to send him a bill that he could sign. And now, with the passage of this legislation, I look forward to that day soon when he gives all Americans the protection they need to freely participate in genomic medicine. This is a momentous day. Thank you, members of the U.S. Senate and the U.S. House of Representatives, for giving a wonderful gift to the American people: protection from genetic discrimination. Passage of GINA can be credited to extensive efforts by literally hundreds of scientists, patients, lawyers, health care providers, and legislators spanning a decade. However, Francis Collins reasoned arguments that the American public should not have the fruits of the Human Genome Project used against them were of singular importance. The accomplishment of the protections GINA affords serve as a testimony to the good one individual can create in a system that to many seems hopelessly mired in competing interests. ON GENETIC TESTING AND ABORTION He is also concerned about prenatal diagnosis in the fast-approaching time when the major diseasecausing genes are easily detected. He cited with trepidation one survey that showed 11 percent of couples would abort a fetus if they knew it carried a gene for obesity. No such gene has been found; it was a study designed to probe where couples would draw the line. It is difficult to say you can't abort, but for overall cultural mores, you run into problems, Dr. Collins said. It's the classic slippery slope. You have a gray scale going from diseases like Tay-Sachs disease that cause death in early childhood all the way to the other end of the spectrum with abortions for sex selection, which most people would say is a misuse of technology. In between is a gray zone. Where do you draw the line? Another problem is that genetic risk assessment does not give absolutes, but instead gives probabilities. It may tell you that you have an 80 percent chance of getting Alzheimer's disease or a 70 percent risk of diabetes, for example. Do you abort a fetus based on a risk rather than a certainty? Dr. Collins asked. He said he wondered how much genetic information a couple should be entitled to. If people can learn everything that science can tell them about fetuses, he wonders, Will that move us toward homemade eugenics? He worries also that those who have money and resources will try to have the perfect baby, by aborting fetuses with genetic defects, and those who are poor will have to take what they get, creating a sort of genetic underclass Family Research Council Action 2

3 ON EMBRYONIC STEM CELL RESEARCH and CLONING (SOMATIC CELL NUCLEAR TRANSFER) ABERNETHY: Not far behind, says Collins, is the development of drugs for Alzheimer's and Lou Gehrig's disease, asthma and diabetes. Collins is also a strong supporter of stem cell research, and he thinks there's a way to do this that, for him, removes the moral objections to destroying a human embryo. Collins favors what's called somatic cell nuclear transfer, in which the nucleus of an egg is replaced by the nucleus of, for instance, a cell of skin. Dr. COLLINS: Now that is very different in my mind, morally, than the union of sperm and egg. We do not in nature see somatic cell nuclear transfer occurring. This is a purely manmade event. And yet somehow we have attached to the product of that kind of activity the same moral status as the union of sperm and egg. I don't know quite how we got there. Do you believe that personhood begins at conception? You mean, is that when we get a soul? Now we're into theology, and it's an area where science isn't really going to give you an answer. The only thing that science can say is that whatever line you draw between the fusion of sperm and egg and the birth of the baby is somewhat arbitrary. On the other hand, that doesn't prove that the soul exists right at that moment of fusion. Identical twins do not have the same soul, yet they started out as the same union of sperm and egg. You're a born-again Christian who suggests that therapeutic cloning could be acceptable. Some other devout people consider it fundamentally immoral. What do you see differently? There is a difference between doing research on an embryo that was generated by sperm and egg coming together, which is the way human beings are created, versus the very bizarre laboratory phenomenon of taking a nucleus from a skin cell or the udder cell of a sheep and putting it into an environment that takes it back in time to its stem cell state. In public discourse, they're both called embryos. Even though the somatic cell nuclear transfer approach is a very different biological phenomenon, in many people's minds it has been all blurred together. As a result, we've really missed out on a chance for a much more thoughtful, nuanced discussion, and we're still trying to recover from that. In the book, Collins also defended research on existing embryonic stem cells, though he has expressed opposition to purposely creating them for research. Collins was present during the signing of an Executive Order by President Obama that reversed the government's ban on funding stem-cell research back in March. So I think one thing we ought to do is, sort of, tone down the rhetoric and try to get our scientific facts straight. So stem cells-- there s lots of different kinds of stem cells. The kind that I think many people are most concerned about are the ones that are derived from a human embryo which is produced by a sperm and an egg coming together. The way you and I got here. There are hundreds of thousands of those embryos currently frozen away in in vitro fertilization clinics. And it is absolutely unrealistic to imagine that anything will happen to those other than they re eventually getting discarded. So as much as I think human embryos deserve moral status, it 2009 Family Research Council Action 3

4 is hard to see why it s more ethical to throw them away than to take some that are destined for discarding and do something that might help somebody. But as a scientist -- I would say we are currently not making as much progress as we could if we had access to more of these stem cell lines. The ones that are currently available for federal funding is a very limited set and they clearly have flaws that make them hard to use. But you know what? I think that kind of stem cell research is actually not the part that s going to be most interesting. The part that s really showing the most promise is to take a skin cell from you or me and convince that cell, which has the complete genome, to go back in time and become capable of making a liver cell or a brain cell or a blood -- cell if you need it to. That s reprogramming. That s called [somatic] cell nuclear transfer in the current mode. And yet people still refer to those products as an embryo. Well, there s no sperm and egg involved here. It is a classic example of a collision between two very important principles. One is the sanctity of human life and the other is our strong mandate as human beings to alleviate suffering and to treat terrible diseases like diabetes, Parkinson's, and spinal-cord injury. The very promising embryonic stem-cell research might potentially provide remarkable cures for those disorders. We don't know that, but it might. And at the same time, many people feel, I think justifiably, this type of research is taking liberties with the notion of the sanctity of human life, by manipulating cells derived from a human embryo. Stem cells have been discussed for 10 years, and yet I fear that much of that discussion has been more heat than light. First of all, I believe that the product of a sperm and an egg, which is the first cell that goes on to develop a human being, deserves considerable moral consequences. This is an entity that ultimately becomes a human. So I would be opposed to the idea of creating embryos by mixing sperm and eggs together and then experimenting on the outcome of that, purely to understand research questions. On the other hand, there are hundreds of thousands of such embryos in freezers at in vitro fertilization clinics. In the process of in vitro fertilization, you almost invariably end up with more embryos than you can reimplant safely. The plausibility of those ever being reimplanted in the future -- more than a few of them -- is extremely low. Is it more ethical to leave them in those freezers forever or throw them away? Or is it more ethical to come up with some sort of use for those embryos that could help people? I think that's not been widely discussed. Yeah, it's called cloning, which is a very unfortunate term because it conjures up the idea that you're trying to create a copy of that human being. And at this point, you're doing nothing of the sort. You're trying to create a cell line that could be used to substitute for something that a person desperately needs. It would only become a cloned person if you then intentionally decided to take those cells and reimplant them in the uterus of a recipient woman. And that, obviously, is something that we should not and must not [do] and probably should legislate against. But until you get to that point, it's not clear to me that you're dealing with something that deserves to be called an embryo or deserves to be given moral status Family Research Council Action 4

5 I would argue that the immediate product of a skin cell and an enucleated egg cell fall[s] short of the moral status of the union of sperm and egg. The former is a creation in the laboratory that does not occur in nature, and is not part of God s plan to create a human individual. The latter is very much God s plan, carried out through the millennia by our own species and many others. From: Francis S. Collins, The Language of God (Free Press, NY), 2006; p. 256 I have two problems with cloning. The most apparent one is the safety concern. There will be carnage of unimaginable consequence if we attempt to clone human beings right now. Everything we know about every animal species for which cloning has been attempted indicates that only a tiny percentage give rise to live births that survive for more than a few days. Most of them result in miscarriages, birth defects, and newborn deaths of uncertain cause. Puzzling and troubling outcomes occur when you try to convince DNA from a differentiated cell that it's actually an embryo again. It is unacceptable, given all of that data, to contemplate the cloning of a human being at the present time. But of course, even if the safety issues were solved, would human reproductive cloning be an acceptable practice? It wouldn't be for me. I believe that human beings have come into this world by having a mother and a father. To undertake a different pathway of creating a human being is a profound departure from the normal state of things. I have yet to hear a compelling argument for why we need to do that. Like virtually everyone else, I am strongly opposed to the idea of human reproductive cloning. Implanting the product of human SCNT into a uterus is profoundly immoral and ought to be opposed on the strongest possible grounds. On the other hand, protocols are already being developed to convince a single cell that has been derived from SCNT to be converted into a cell that senses glucose levels and secretes insulin, without going through any of the other steps of embryonic and fetal development. If such steps can result in tissue-matched cells that cure juvenile diabetes, why would that not be a morally acceptable procedure? From: Francis S. Collins, The Language of God (Free Press, NY), 2006; p. 256 ON THE GENETICS OF HOMOSEXUALITY An area of particularly strong public interest is the genetic basis of homosexuality. Evidence from twin studies does in fact support the conclusion that heritable factors play a role in male homosexuality. However, the likelihood that the identical twin of a homosexual male will also be gay is about 20 percent (compared with 2-4 percent of males in the general population), indicating that sexual orientation is genetically influenced but not hardwired by DNA, and that whatever genes are involved represent predispositions, not predeterminations. From: Francis S. Collins, The Language of God (Free Press, NY), 2006; p. 260 ON ETHICS, SCIENCE POLICY, AND SOCIETY First of all, it would be a mistake to simply leave those decisions to the scientists. Scientists have a critical role to play in such debates, since they possess special expertise that may enable a clear distinction of what is possible and what is not. But scientists can t be the only ones at the table. Scientists by their nature are hungry to explore the unknown. Their moral sense is in general no more or less well developed than that of other groups, and they are unavoidably afflicted by a potential conflict of interest that may cause them to resent boundaries set by nonscientists. Therefore, a wide variety of other perspectives must be represented at the table. From: Francis S. Collins, The Language of God (Free Press, NY), 2006; p Family Research Council Action 5