TRANSCRIPT: Bob Abernethy’s interview with Dr. Francis Collins, Director of the Human Genome Project at the National Institutes of Health

June 16, 2000

 

BOB ABERNETHY: Are you a mainline Protestant? An Evangelical Protestant? What are you?

DR. FRANCIS COLLINS: I guess I’d call myself a serious Christian. That is someone who believes in the reality of Christ’s death and resurrection, and who tries to integrate that into daily life and not just relegate it to something you talk about on Sunday morning.

ABERNETHY: As briefly as you can summarize it, what is the Human Genome Project?

COLLINS: The Human Genome Project is a multifaceted effort to understand our own instruction book, to read those 3 billion letters in the DNA code that makes up that book, and to develop methods that help us understand what it’s telling us.

ABERNETHY: And what’s the promise of it?

COLLINS: All of biology and all of medical research is going to be divided by what we did before we had this information and what we can do after we have it. We shouldn’t overstate the immediacy of the promise because, after all, most of the letters in this instruction book won’t make sense to us immediately. But having it is a historic moment. It will really alter the way in which we approach problems in medicine in a profound way. And before long, that will begin to have a serious impact on the practice of medicine, as well.

ABERNETHY: What are we looking at as realistic possibilities?

COLLINS: In the next five to seven years, we should identify the genetic susceptibility factors for virtually all common diseases — cancer, diabetes, heart disease, the major mental illnesses — on down that list. Out of that will come the ability to make predictions about who’s at risk and, in many instances, that itself can be extremely helpful by allowing you to take advantage of surveillance, so that you are diagnosed early before a real problem arises. In the longer term — perhaps ten or 15 years — this will lead to a new generation of therapies that is going to be much more successful and effectively targeted towards the basic problem than what we have now.

ABERNETHY: What are the diseases that you think might be able to be prevented or cured because of this knowledge?

COLLINS: I think in another 20, 25 years, we should be able to prevent or cure most cases of cancer, of diabetes, of heart diseases, of multiple sclerosis, of asthma. Not to say that we will all live forever. The death rate will still be one per person. Something will get us, I suppose. But the current situation where far too many people are stricken with illnesses while still young or in the prime of life will be much improved by this.

ABERNETHY: I’ve heard people talk about the possibility of living to be 150 or something like that. If you could do that, would you want to?

COLLINS: I’m not sure that I’d look forward to living to be as old as Methuselah. I think, actually, there’s a certain appropriateness of the life span being limited in certain ways. But I sure hope that the life span I have will be spent in a healthy life style and not dealing with chronic, severe illness.

ABERNETHY: And what’s your greatest hope for this?

COLLINS: I’m a physician. I’ve spent far too much time in clinical situations where I didn’t understand the illness and I didn’t know what to do about it. My greatest hope is that this project, which is part of the long tradition of medical research, will give us the tools to understand and treat and cure diseases that we currently don’t have enough to offer for.

ABERNETHY: Do you have some favorite phrases that you like to use to describe what this is?

COLLINS: I think it is a fairly decent analogy that the genome is our instruction book. It is maybe a bit of a grandiose statement to call it the “Book of Life,” ’cause there’s a lot more to life than this biological set of parts. But it does sort of bring up to mind an analogy that’s pretty decent. It is, after all, a book that’s written in a simple, linear fashion. It only has four letters instead of 26, and it’s a book that we will take a long time to try to understand. It’s a very large book. It’s a very mysterious book. It’s also basically important to think of this as not more than it is. It is, after all, a set of instructions; but it does not really tell us what being human is — nor, would I argue, it ever will.

ABERNETHY: Tell me how you see it as a religious person discovering God’s creation. And how does what you’re doing fit into your beliefs?

COLLINS: Sure. I came to my faith sort of in a later time in life than many people. I didn’t really experience a conversion until I was 27. And I was already interested in genetics, and I worried that there was gonna be a collision here in terms of my interest as a scientist and what I’d come to believe as a person of faith. But, actually, this has been a wonderful, synthetic experience. For me, as a person who believes in a personal God, the opportunity to uncover something about us that nobody knew before but God knew is really a moment not to be missed. It expands the experience of discovery in ways that people who are not believers, I think, don’t quite get to experience. It’s an opportunity both for scientific exhilaration and actually for worship.

ABERNETHY: Do you worry that having a parts list will encourage the idea that our genes are us? Are all we are?

COLLINS: I agree that one of the greatest risks of this focus on the genome — and it’s certainly a focus I’m excited about — is that we overstate its significance and that we draw the conclusion that everything about us — from what we had for breakfast this morning to who we chose as our life’s partner — is something that’s hard-wired into our DNA, and free will goes out the window, and we move into this mind-set of genetic determinism. The scientific basis for that does not exist. So much of what we’ve learned about human behavior tells us that it’s a lot more than your genes that influence what kind of personality you have. And let me quickly say certainly, as a person of faith, that free will, which is often overlooked in these nature versus nurture discussions is not gonna go out of fashion just because we have the parts list in front of us; and that free will, which distinguishes us in a particularly obvious way from other species on this planet, is, in my view, the most important feature of this discussion when it comes to our relationship with God.

ABERNETHY: What’s your biggest fear?

COLLINS: Well, clearly, learning about the genome is a laudable activity. I think it’s something that God is enthusiastic about — that we’re uncovering the incredible intricacies of our own created being. At the same time, how we decide to use that knowledge might be for good, or it might not be. Virtually every new scientific discovery carries that risk, and this one particularly so because this is about us. I can imagine scenarios where people would use this information in discriminatory ways to try to beat up on each other: “Oh, you’ve got a risk of this disease. We’re not gonna give you health insurance,” or, “We’re not gonna give you a job.” Those risks are with us right now. I can imagine other scenarios where we try to take charge of our own biological situation by trying to optimize the characteristics of future generations. A technology to do that right now doesn’t exist, but one can’t be too sanguine that it won’t become possible. And I would personally find that very deeply troubling. In fact, 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.

ABERNETHY: But how can you manipulate the genes or replace certain defective genes in a way that will prevent disease without at the same time passing on the new characteristics to all the future generations?

COLLINS: So, my sense is we should not at the present time — even for the attempt to reduce the likelihood of disease — alter the germ line. That is the DNA that’s going to get passed on to future generations. We don’t know the consequences of that. And if this is an alteration which has other effects that we aren’t able to perceive until a couple of generations go by, what have we done? I think we should have an absolutely strict moratorium on any manipulations of the human germ line for the present time, because we don’t know how to do that safely.

ABERNETHY: But you can cure disease and develop ways to prevent disease without affecting the germ line

COLLINS: Absolutely. The germ line is the part of the DNA that does get passed to the next generation. Most of our DNA is not germ line. The DNA in my lungs is not gonna get passed to the next generation. If I had cystic fibrosis and I wanted that cured in my lungs and you could change the genes in my lungs that have that glitch, I’d want you to do that. But that would not affect my offspring. I think that’s a critical distinction. And all of the promise that I see for genetic therapies for diabetes, or heart disease, or cancer does not require you to go into the germ line to make those changes.

ABERNETHY: What about enhancement? Should I be able to do that?

COLLINS: Well, we’ve had a lot of debate about the “designer baby” scenario. Some of it’s very deeply troubling, I think, to most people. It is to me, too. Scientifically, we don’t know how to do most of the things that people project. We have no idea what the genetics are of intelligence, musical ability, athletic capabilities, attractiveness. We can’t even define a lot of those things, much less identify the genes that are responsible. Suppose we were able to learn some of that — and we will — it will still be a pretty sloppy business if you’re counting on using this to optimize the characteristics of your offspring. You can get pretty disappointed, because all of these things have profoundly important environmental contributions. Again, I don’t think we should be doing those sorts of things if it means manipulating the germ line, because the safety aspects of that are unknowable — and are essentially unknowable without taking risks with future generations that we shouldn’t take.

ABERNETHY: Is it realistic to think that some day we might be able to transform ourselves into a whole new species?

COLLINS: Well, people have talked about, “Okay. Suppose we get really effectively able technologically to go and manipulate our own gene pool in ways that are safe, where we don’t face this risk of uncertain, downstream consequences. Is that something we should contemplate? Are we stuck in an evolutionary state that could, in fact, advance if we took charge of our own evolution? I find that deeply chilling, to be honest. I think of our species as having a unique character in terms of our relationship with God. What do we do to that relationship if we go in and alter ourselves? How are we in a position to be able to know what’s an improved characteristic? There’s a certain arbitrariness to that. And, who gets to decide what’s an improvement? It’s a bit of a worrisome question, given our history here, even in the past hundred years, of trying to use genetic manipulation to improve certain aspects of humanity. That didn’t work so well the last time.

ABERNETHY: What do you say to people of faith who are troubled that we may be reaching for very forbidden fruit?

COLLINS: Yes. If we were able to play God the way that God does, then perhaps people wouldn’t worry so much. God’s m- — effective oversight of His creation is done in a benevolent way. We fallen creatures unfortunately can’t be counted on to act with that same benevolence. In that regard, the idea of our trying to change our own identity on a biological basis becomes immediately suspect in terms of what the motivations would be. Now, whether you call that “playing God,” which is such an overused phrase it’s sort of become almost meaningless, or whether you simply say, “That is territory we shouldn’t go into,” I’m gonna say it’s territory we shouldn’t go into.

ABERNETHY: We’re not only morally, but in physical ways we’re flawed?

COLLINS: Yes.

ABERNETHY: Surely, if we can shouldn’t we do that?

COLLINS: If we could develop a way of reducing the prevalence of a particular, very deleterious gene — say Tay-Sach’s disease or sickle cell anemia — in a fashion that did not involve actually going in and trying to change the germ line DNA, then I think you could make a moral argument that that is an acceptable activity for human beings, because it is a direct effort to alleviate human suffering and reduce illness. But that’s a pretty limited set of boundaries that will be both technically demanding and I think, in social terms, acceptable. Outside of that, when you start talking about enhancements or changes in character traits, you immediately bump into what’s an improvement and what isn’t and, there, who are we to say that in most instances, as fallen creatures with our own set of agendas.

ABERNETHY: You worry about a possibility of developing a sense of “us versus them,” the “superior” versus the “inferior”? As you suggested, there have been experiments with Nazi Germany that remind us of the dangers of that.

COLLINS: Yes.

ABERNETHY: The disabled worry about being discriminated against. To what extent is that a danger, and what should we do about it?

COLLINS: Yes. Certainly, you can bring to bear on this whole argument against enhancement efforts the fact that they will be unlikely, if attempted, to be evenly available to all. And that puts us, then, in a moral position that’s pretty untenable. If this whole area, if we were to allow it, increases the separation between the haves and the have-nots, what are we doing here? One of the strongest principles of humanity is this notion of equality. Could this be done in that fashion? It seems doubtful. And you are right. There’s also this issue of what are we saying to people who are disabled if the effort becomes to basically avoid that kind of outcome? Does that mean that their existence is considered secondary in terms of its value, compared to the mythical perfect person? I think there’s a serious issue here in terms of our attitude towards diversity in our ranks — diversity of all sorts, including disabilities. If we set up a goal to try to eliminate some segment of our own population, what are we saying about our benevolence, about our willingness to accept differences?

ABERNETHY: So, what do we need? New laws? What should they be?

COLLINS: Well, right now, we need laws to prevent genetic discrimination. This is a matter of some urgency. People who are in a position of finding out that they’re at risk for some illness, whether it’s breast cancer, or heart disease, are afraid to get that information — even though it might be useful to them — because of fears that they’ll lose their health insurance or their job. The Human Genome Project has studied this issue. We have this ethical, legal and social implications program. We have ten years of good scholarship on this, and it’s clear that we need effective federal legislation to make that not possible. And there are bills that have been written and introduced, and we just need to get them passed and be done with it. It’s clear what has to be done here.

ABERNETHY: And what about patenting? At what point should this information be privately owned?

COLLINS: Patenting tends to get people’s juices flowing when you put the word “gene” and the word “patent” in the same sentence. And understandably so. This is stuff we’re carrying around — all of us — inside all of our cells. Should somebody be able to lay claim to it? I think, though, it helps with patenting to step back from a sort of strong moral stance and think of patenting, really, as a construct — a legal construct — that is supposed to provide public benefit. There are situations where being able to have intellectual property claim on a gene — which is not to say you own it, but you have this claim — provides an incentive to develop a product which the public needs, and without which that product would not occur. And in that instance, I think a gene patent makes sense. Even though it may make you sort of uneasy at some fundamental level, if the point of it is public benefit, it’s probably being achieved. Where I take exception, though, is people applying for patents on genes that they don’t know the function of, do not have an idea of a pathway of how this is gonna lead to public benefit, and basically are just engaged in staking claims and putting fences around parts of the genome, hoping that somebody will have to pay them later when they find out what this is all about. That we should not do.

ABERNETHY: And does that take an act of Congress? Should Congress prevent that?

COLLINS: Well, I’m heartened by the actions the U.S. Patent Office has taken in the course of the last few months. They are clearly moving the bar significantly higher before they will allow you to get a patent approved on a gene sequence, and they are requiring you to provide significant evidence of what that gene does and how it could be useful before they’re going to grant you that patent. It’s not completely clear how this is all gonna settle out, but it looks more encouraging than it did a year or so ago.

ABERNETHY: On the question of ownership, is it your feeling that each individual should have the absolute right to decide who sees his or her genetic profile?

COLLINS: Absolutely. A cardinal principle that we must not stray from — no exceptions — is that your genetic information is your business in terms of who sees it. Nobody should be gaining access to that information without your explicit permission, and nobody should be requiring you to take a genetic test unless you decide that that’s what you want to do.

ABERNETHY: Would you like to know your genetic profile?

COLLINS: I would like to know about the things in my DNA that place me at risk for some illness down the road that I could do something about if I knew about it. I’d like to have that information. I suspect in a few years, as the number of such possibilities comes along fairly rapidly, I’m gonna be one of the people saying, “Okay. Tell me. I need to know this. Let me prepare myself for a way to avoid that illness that may otherwise be lurking there, waiting for me.”

ABERNETHY: Something for which there is no cure — and no prospect of a cure? So to what extent would knowledge of my genetic profile affect the way I live? Would it reduce my ability to be spontaneous and hopeful?

COLLINS: I think people will vary in their interest in this information, particularly in circumstances where there’s nothing you can do about it. For myself, I’m not sure I want to know about those illnesses that may be at heightened risk for me, but for which nothing can be done. I may say “no, thanks” to that. And we should preserve that option. Nobody should be forced to find out everything. You should be able to decide which parts of this panel do you want to sign up for and which parts do you want to pass up. I mean right now, we know how to test for about half of the hereditary risks for Alzheimer’s disease. But there’s nothing you can do if you’re found to be in that high-risk category. I don’t want that information, and very few other people do, either.

ABERNETHY: What do you say to these people who argue that spending $3 billion on this is all very well, but essentially it’s not going to affect more than a small number of people; and that same money could alleviate hunger, educate, etc.? Why is this such a high priority? Why should it be?

COLLINS: I think if you believe that one of our strongest mandates as human beings is to try to heal the sick, that we then look at an opportunity of this sort as a gold moment to be able to, in a whole new way, understand why disease strikes some people at certain times and what to do about it. The actual investment we’re talking about here is actually quite modest on the scale of things. The Human Genome Project, despite the public attention it has received, is less than two percent of the budget that the United States puts into medical research through the National Institutes of Health. We’re a rather modest investment, to be sure. And, actually, the Project (Collins cont.) ended up costing less than people expected and got done sooner. If your notion is that it is a good thing to try to cure disease, this is the best thing going right now to be able to go beyond what is currently often a rather empirical approach, a rather descriptive approach, an approach that looks all too often at downstream consequences instead of the fundamental problem and change all of that. This is shining a light into that black box that we’ve had to live with for cancer and heart disease and diabetes for so many years, and really illuminating at a fundamental level what the problem is. How could you not do that?

ABERNETHY: Many say there’s got to be a really serious national debate … and there isn’t one. And the religious community has got to pick itself up and really get informed and become a real part of this.

COLLINS: I think it’s critical that we engage a broad set of participants in the debate about where we go from here with genetics and the Genome Project. And, in particular, the Church needs to be engaged, needs to be heard from in a much more significant way than has been the case up until now. I think many people of religious persuasions are alarmed about this in a general sort of way without having enough information to know where are the areas that most need attention, and which ones of these are actually science-fiction scenarios that one need not bother spending a lot of time on right now. Scientists have something to bring to this, which is the facts of the matter. But scientists are not in a special position here as far as deciding the consequences for society or making moral choices about going this direction or that. That has to be done in a much broader community, and the Church, of all those communities, is probably the one in the strongest position to bring this long tradition of ethical thinking to the table. It troubles me that that has not happened; that in some instances sort of the reverse has happened.

There seems to be a polarization — not necessarily based on facts, but just based on fears — and we really need to get past that. Some churches are making very significant efforts, and they deserve a lot of credit. But the real synthesis of the thinking here has not happened.

ABERNETHY: Could you tick off the diseases that now plague us that this knowledge might lead us to prevent or cure?

COLLINS: In another 20 to 25 years, based on this genetic analysis and understanding of common diseases, we should be able to prevent or cure many cases — maybe even most cases — of cancer, of diabetes, of heart disease by a combination of strategies focused on prevention, early diagnosis — maybe even before you have symptoms — and therapies that are much more effectively targeted to the problem than what we have now.

ABERNETHY: What does that mean?

COLLINS: Will we be able to extend the normal human life span beyond the sort of 100 years that we seem to currently enjoy if things go well? I don’t know. What I do think we’ll be able to do is to offer to people a much better chance of living out that life span in a healthy status, instead of being plagued by chronic disease. And who knows? We may understand genes for aging in another 30 or 40 years even to the point of being able to push back the limits on that normal life span, although I doubt that that’s going to be very straightforward. There are many, many factors at work here, and it’s not clear how easy they will be to manipulate.

ABERNETHY: Do you want to live to be 150?

COLLINS: I’m not sure I have a great desire to push beyond these hundred years. When I’m 95, I may say — (chuckling) — differently. It seems to me that the advantages of going on forever are not necessarily overwhelmingly compelling. (Chuckling) — and having a life span of a hundred years seems pretty reasonable right now.

ABERNETHY: And we shouldn’t mess with what’s passed on to the future generations.

COLLINS: In my view — and this is shared, I think, by most ethicists and most scientists — we shouldn’t be messing with the germ line. We don’t know enough about what we’re doing not to be taking terrific risks not only with that person, but with people who are not giving their consent to this, their future children and grandchildren.

ABERNETHY: A hundred years from now, what do you think historians will say about this moment and the knowledge that is about to be completed?

COLLINS: I think historians will look back on this as the greatest scientific adventure that humankind ever went on — at least up until this point. Maybe we’ll go on some other ones in the next hundred years. But compared to anything we’ve ever done in science, this beats it all. Splitting the atom was incredibly important and powerful. Going to the Moon — wow, what an adventure that was. But this one is about ourselves. This is hard to overstate in terms of its significance. Having said that, a hundred years from now, we’ll still be trying to figure out what this instruction book is telling us. We’ll know a lot of it, but the mysteries will not be completely unraveled.

ABERNETHY: Why is it so important?

COLLINS: I think if you’re interested in medicine, if you’re interested in human biology, if you’re just interested in what’s it mean to be human, the idea of having this book of instructions read out for the first time is pretty powerful. We only have to do this once. You don’t have to go back and do it over and over again. If we do it right, it’s gonna be there. And it will change entirely the way that we approach research questions. It will change our view of ourselves — hopefully, incredible, responsible ways. And it will change the whole way that science gets practiced from here on out.

ABERNETHY: To what extent are you concerned, or worried, perhaps even jealous or resentful that private organizations have joined this search and pushed it very, very fast and essentially are competing with you?

COLLINS: We always said that if the Genome Project was going to be successful, it would have to engage the private sector — that we would want vigorous activity in the biotechnology and pharmaceutical arena. The fact that that’s happening is terrific. That means that the future benefits to the public are much more likely to happen than if this was a purely academic, basic-science activity. So, the fact that there is so much activity in the private sector is the strongest endorsement you could have of the way in which this is perceived as a valuable activity. I think there’s been far too much made about the notion that there is some sort of a race going on. It’s the wrong metaphor. We’re all trying to get the information. There are different missions involved. The public project exists to give its data away, and we do that every 24 hours, without any restrictions on its use whatsoever. Private industry can’t afford to do that. Their stockholders would throw them out if they did such a thing. So, there is some tension here, some competition. But in the long run, this is a good thing. This is not an unfortunate outcome. Ten years from (Collins cont.) now, this whole hoo-ha about what is perceived as a race won’t seem very interesting. What will matter is: Did we get the human genome sequence in a timely fashion? Did we do it right? Did we do it so we didn’t make a lot of mistakes? And, was it available to every scientist who had a good idea and wanted to figure out what it meant?

ABERNETHY: But are there dangers in the competition right now that it won’t be done right?

COLLINS: I don’t think there’s much risk of a bad outcome. Almost 90 percent of the human sequence is already in the public domain, derived by this International Sequencing Consortium. There is no risk that somehow this will all end up being privatized, or commodified, or inaccessible, or done in a strategy that turns out not to work. It’s too late for that risk to be worried about too much. And that’s a good thing. I think there’s a common assumption that you cannot both be a rigorous, show-me-the-data scientist and a person who believes in a personal God. I would like to say that from my perspective that assumption is incorrect; that, in fact, these two areas are entirely compatible and not only can exist within the same person, but can exist in a very synthetic way, and not in a comp- — compartmentalized way. I have no reason to see a discordance between what I know as a scientist who spends all day studying the genome of humans and what I believe as somebody who pays a lot of attention to what the Bible has taught me about God and about Jesus Christ. Those are entirely compatible views. Science is the way — a powerful way, indeed — to study the natural world. Science is not particularly effective — in fact, it’s rather ineffective — in making commentary about the supernatural world. Both worlds, for me, are quite real and quite important. They are investigated in different ways. They coexist. They illuminate each other. And it is an — a great joy to be in a position of being able to bring both of those points of view to bear in any given day of the week. The notion that you have to sort of choose one or the other is a terrible myth that has been put forward, and which many people have bought into without really having a chance to examine the evidence. I came to my faith not, actually, in a circumstance where it was drummed into me as a child, which people tend to assume of any scientist who still has a personal faith in God; but actually by a series of compelling, logical arguments, many of them put forward by C. S. Lewis, that got me to the precipice of saying, “Faith is actually plausible.” You still have to make that step. You will still have to decide for yourself whether to believe. But you can get very close to that by intellect alone.

ABERNETHY: Do you find in science grounds for, and encouragement for, faith?

COLLINS: I think it’s probably difficult to take the investigation of the natural world and say, “I can prove to you, because of the elegance and beauty of all of this, that there must be a creator God.” You can certainly use those arguments, but I think they alone will not carry the day for a skeptic. Once one has become a believer, this is, in fact, a very satisfying aspect of all of this — that you see things that God knew before, and now you get to see them, too. And that is an exhilarating experience. But as an argument to say, “Well, flowers are so beautiful,” or, “This DNA sequence is particularly elegant; therefore, you have to believe in the creator God” — I have not found that in itself to be compelling to a skeptic.

ABERNETHY: What do you say to your fellow Christians who say, “Evolution is just a theory, and I can’t put that together with my idea of a creator God”?

COLLINS: Well, evolution is a theory. It’s a very compelling one. As somebody who studies DNA, the fact that we are 98.4 percent identical at the DNA level to a chimpanzee, it’s pretty hard to ignore the fact that when I am studying a particular gene, I can go to the mouse and find it’s the similar gene, and it’s 90 percent the same. It’s certainly compatible with the theory of evolution, although it will always be a theory that we cannot actually prove. I’m a theistic evolutionist. I take the view that God, in His wisdom, used evolution as His creative scheme. I don’t see why that’s such a bad idea. That’s pretty amazingly creative on His part. And what is wrong with that as a way of putting together in a synthetic way the view of God who is interested in creating a group of individuals that He can have fellowship with — us? Why is evolution not an appropriate way to get to that goal? I don’t see a problem with that. The only problems that get put forward are by those who would interpret Genesis 1 in a very literal way. And that interpretation in many ways is a — is a modern one. Saint Augustine in 400 AD, without any reasons to try to be an apologist to Charles Darwin, agreed that that was not a particularly appropriate way to interpret the words that are written in that first chapter of the Bible.