INTERVIEW TRANSCRIPT

C-SPAN’S “NEWSMAKERS”

Guest: Dr. Francis Collins, Director of NIH’s National Human Genome Research Institute

Reporters: Rick Weiss, Washington Post &

Jonathan Rockoff, Baltimore Sun

Moderator: C-SPAN

TAPE DATE: Friday, April 25, 2008

AIR DATE/TIME: SUNDAY, April 27, 2008 at 10 a.m. and 6 p.m. ET

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SUSAN SWAIN, HOST: Legislation is moving in Washington called the Genetic Information Nondiscrimination Act. And “Newsmakers” is very pleased to welcome someone who has been very involved in the debate over this, Dr. Francis Collins.

He co-led the government’s effort to fully sequence the human genome, and he is the director of NIH’s National Human Genome Research Institute.

Thanks for being with us, Dr. Collins.

FRANCIS COLLINS, DIRECTOR, NATIONAL HUMAN GENOME RESEARCH INSTITUTE, NATIONAL INSTITUTES OF HEALTH: Delighted.

SWAIN: As we’re taping on this Friday, we’ve all been noting something we should share with the audience, that today is actually National DNA Day.

COLLINS: How about that?

SWAIN: The five-year anniversary of the announcement of your effort.

COLLINS: And also the 55th anniversary of the publication of Watson and Crick’s description of the double helix, published in “Nature,” April 25, 1953.

SWAIN: Both of which have given us lots to talk about today, so let’s introduce our two guests.

Rick Weiss is at the Washington Post. He is medical and science reporter for the newspaper. And Jonathan Rockoff, Baltimore Sun, health and science policy reporter.

And Jonathan, we’re going to start with you for questions.

JONATHAN ROCKOFF, HEALTH AND SCIENCE POLICY REPORTER, “BALTIMORE SUN”: Dr. Collins, good to see you.

COLLINS: Nice to see you, Jonathan.

ROCKOFF: Let’s talk a little bit about the legislation and what it does, and why it’s so important.

COLLINS: Well, I think it is clear that the advances that are building on the success of the Human Genome Project are providing us with a real opportunity to revolutionize the practice of medicine.

We have the opportunities now to be able to practice prevention in a more individualized way, instead of doing it as a one-size-fits-all approach. And already, families, for instance, that have a high incidence of breast cancer or colon cancer are able, if they want to, to find out who is at high risk, even while they’re still healthy, allowing them to take advantage of that information to try to prevent a bad outcome.

And yet, if that kind of genetic information about a healthy person would be a reason to lose health insurance, or perhaps to lose your job, that would be a very unfortunate outcome of what is supposed to be a beneficial set of scientific discoveries.

So, it was identified, goodness, right at the beginning of the genome project when our Ethical, Legal and Social Implications Program was founded, and pointed their finger to this issue as one that needed attention. Genetic discrimination could easily thwart all of the hopes that people had about where this might lead.

It has taken a very long time. In fact, the first bill in the U.S. Congress was introduced on this topic 13 years ago. And I’m delighted that here we are in 2008 with essentially the last hurdle having been crossed, with the Senate passing this bill unanimously yesterday. Still, we need the House to pass on the same bill. We expect they will. And the president has indicated he will sign it.

And so, finally, Americans will not have to be fearful that genetic information, that they might really want to have, would be used against them. And we can move on to a brighter future of trying to take all of these discoveries and apply them for public benefit.

ROCKOFF: So, I talked to some of those folks yesterday, who were afraid of getting tested, you know, precisely because they were fearful of insurance not covering it, or it affecting employment decisions.

Why do you think the legislation took so long?

COLLINS: Well, that’s a really interesting question. And I think the answer maybe has implications beyond just this issue.

I can’t tell you how many times, when I was called and asked to serve as a witness in one of the dozens of hearings that have been held about this legislation over the last 12 years, the staffer would say, “Are you willing,” and I would always say, “Yes.”

And then they would say, almost invariably, “Can you identify some victims that we can bring to the hearing?”

The implication here is that we don’t act until we have a lot of victims.

Well, we could see that this problem of genetic discrimination was a problem largely of the future – at least 12 years ago it was. And you could see that it was inevitable.

But the implication of our system is, you wait until you have victims. You wait until there’s a crisis, and then you act.

And I don’t think there has been this sense of crisis about genetic discrimination, at least not sufficiently to get it over the finish line, despite a lot of support from members of the Congress. And there have been real heroes here.

In the House, goodness, Louise Slaughter, who brought this idea forward a dozen years ago. More recently, Judy Biggert, who has been a real champion on the Republican side. In the Senate, Senator Kennedy has just been an absolute champion of the need to do this. And Senator Snowe, likewise, has really carried a lot of the enthusiasm and the urgency. Senator Enzi more recently picking up that same mantle, and very much wanting to see this happen.

But there was always something else that was more urgent. I don’t know that there was real major resistance to getting this done. After all, it has now passed both houses – close to unanimously in both cases. It was just making it a priority.

And I think what that says is, that our system is not necessarily well put together for preventive legislation – maybe just like our medical care system isn’t very well put together for preventive medicine. We’re still kind of in this mindset of, let’s wait until there’s a crisis, and then somehow we’ll deal with it.

All the things that are facing our country and our world – we’re going to need to do better on this preventive strategy, both in medicine, in energy crisis and climate change, because things are coming along pretty quick. And a system that waits until things are in deep trouble is maybe not the best system.

SWAIN: Rick Weiss?

RICK WEISS, MEDICAL AND SCIENCE REPORTER, “WASHINGTON POST”: I’m wondering how this affects consumers right now. I think most of us go to our doctors, we get some routine tests. It’d be pretty unusual, I think, for a doctor to recommend to me that I get a gene test of some kind. I’m not sure I’ve had one before, unless I didn’t know it.

What kind of tests are we talking about? How many are out there? And are we really talking about a research enterprise at this point, or something that’s clinically relevant for patients?

COLLINS: So, it’s both.

Of course, one genetic test which has been available for a long time, which you probably have had – or at least you should have – is your family medical history. Now, there’s a test – I guess you could call it that – where you inquire about people’s parents and children and siblings, and aunts and uncles and grandparents. And from that, you can actually make a reasonable inference about that individual’s risks, and you can do some personalizing of the plan for prevention that we should all be following, and often don’t.

And one of the things I like about this bill, the Genetic Information Nondiscrimination Act, is that it covers family medical history under the definition of genetic information. And that’s really important that it did so.

So, at that level, that sort of widely available, even free genetic test, has been part of our medical care system, although we haven’t used it very efficiently.

But up until now, an actual DNA test has largely been limited to people who had a very strong family history of a particular condition, and a condition where some of the DNA causes had been sorted out – BRCA1 and BRCA2, for instance, the widely understood contributors to high risks of breast and ovarian cancer. Lots of women have either considered or gone through that kind of testing.

But the big deluge of discovery is happening right now, that takes us beyond those highly heritable conditions into the more common things that fill up our hospitals and clinics. Diabetes, heart disease, the common cancers, asthma, multiple sclerosis – all of those in the last year have had significant genetic risk factors identified.

Now, has your doctor told you about that? I bet not. Has your doctor suggested you might want to be tested for those things? I would bet not.

But the companies are doing so. And there are now for-profit companies that are marketing this kind of extensive DNA testing directly to the public. And, I gather, quite a lot of people are interested in that.

And it’s a good thing for them that this legislative protection is arriving just in time to avoid what might have otherwise been some unfortunate outcomes, where people thought they were getting information to help themselves, but then discovered that it was used against them by a health insurer or by an employer.

SWAIN: But let me pick up that idea right there, just as you’re mentioning it, because if you type genetic testing on the Internet and do a search, all kinds of options pop up.

COLLINS: And it’s the wild, wild west out there.

SWAIN: Well, in fact, that’s the point of the question.

Is there another kind of legislation needed to protect the public from fraudulent practitioners, people who aren’t really doing legitimate genetic testing and charging people for it?

COLLINS: Well, this also has been a topic of debate for a dozen years. In the Genome Institute, we originally had a task force on genetic testing to look at this question, should there be more oversight?

Because right now, federal oversight of genetic testing is essentially not happening unless the test is done in the form of a kit that’s distributed to multiple hospitals to run in their labs. Then FDA takes responsibility for overseeing it.

But if a lab is doing testing inside their own walls – what we call a home brew kind of lab test – outside of having some overview of whether they’re just following good laboratory procedures and not mixing up samples, there’s no real oversight about whether the test is valid or not.

And this has now, over those 12 years, gone through numerous discussions and is in the middle of a debate by the Secretary’s Advisory Committee on Genetics, Health and Society. And they have actually just come forward with a series of recommendations about ways that this might be tightened up.

I mean, there are many reputable companies out there that are offering tests that are well validated. But there’s also some crazy stuff that could actually, I think, be quite misleading or even harmful to people.

You can go to the Web, for instance, and read about a test you might want to have to find out why your children are misbehaving. We don’t know the genetics of that kind of hyperactivity well enough to be offering it in that way, in a way that might be quite confusing and misleading.

You can go and find out, well, what’s your particular metabolism? And maybe your nutrition ought to be altered. And oh, yes, by the way, after the test we’ll sell you some nutritional supplements for thousands of dollars. What a deal.

Those kinds of things, clearly, are based upon science that’s just not there.

WEISS: You know, setting aside some of the quirkier genetic tests being offered out there, you raise the question of what to do with this kind of – or how this sensitive information ought to be conveyed to people.

These companies you’re talking about are direct-to-consumer. There’s no medical professional serving as an intermediary or genetic counselor. And yet, even doctors, from studies I’ve seen, are not particularly knowledgeable about how to interpret genetic tests.

How are people supposed to make use of this information? Great, they’re not going to get discriminated against. But what do they do with the information? Who do they go to, to help them understand it?

COLLINS: This is the big problem. For starters, there ought to at least be a central repository, a database of information, constructed in a fashion that’s interpretable by the average person who doesn’t have a Ph.D., to say, OK, what’s the data that says that this test actually has a clinically valid kind of result?

There is no such central database. That is one of the recent recommendations of the secretary’s advisory committee, one that I strongly support, because sunshine would be a good start here. If we’re trying to understand what we know and what we don’t know, let’s actually put it out there, so people can evaluate it. So, there’s that issue.

There’s certainly the big issue about health professional education in genetics. Most physicians, nurses, nurse practitioners, physician’s assistants, aren’t quite ready to step into the role of genetic counselors.

And yet, they’re going to be asked to do so in the near future, as people come walking into the office carrying their printout from one of these direct-to-consumer companies and saying, “Can you help me understand what it means? This thing says that my diabetes risk is like 1.2 fold higher. Does that mean I’m going to get it? And what should I do?”

It’s not an easy question to answer in the seven minutes that that interaction is going to be allocated in our current system. So, we have a big issue here in terms of beefing up familiarity in health care providers with the information.

And I think the reputable companies are trying to play a useful role there by providing the kind of information to people that is interpretable by people who don’t necessarily have a mathematical propensity. But it’s going to be tough.

These are not results that are going to be, “You’re going to get this one. You’re going to have a heart attack on your 42nd birthday. And, no, you’re not going to ever get that one.” It’s not like that.

It’s going to be, “Well, your risk of colon cancer, it’s about 20 percent higher than the average person. That still means you’re probably not going to get it, but you might want to change your surveillance.” And, “Oh, yes, your risk of diabetes, well, it’s actually about 30 percent less than the average person.”

Well, does that mean you can stop exercising and eat whatever you want? No. You could still get it.

It’s this squishy statistical information, which could be very valuable, but it’s hard to understand. It’s hard to integrate. It’s hard to figure out how to alter your health behavior in a rational way based on that.

We have a study going on in Detroit right now. We’re enrolling 1,000 people who are currently healthy, and offering this kind of predictive genetic information for common diseases called the multiplex project.

And we’re going to follow them for a year and see, is it possible for them to really internalize this in a way that makes sense. Or over time, does it begin to get skewed in one direction or the other? And what do they actually do with the information? Does it change their view of themselves? Does it change their health behavior? What’s the output?

We really need to know, on a careful research basis, what we’re doing here before this suddenly finds its way into the standard of medical practice, and we wonder why we did that.

WEISS: I had someone tell me that the only genetic test that really has been shown to change someone’s behavior is a pregnancy test. So, we’ll see if you sort of make that …

COLLINS: That’ll do it. It’d be hard to match that one for impact.

ROCKOFF: So, here we are. We’ve got this legislation almost behind us, but we are still faced with the clinical application of these tests and issues about their reliability and validity of the tests.

If I’m a consumer, should I go ahead and start taking these tests? And if I’m a doctor, how do I start taking advantage of them?

COLLINS: Well, I think the usual recommendation applies here. If you’re a consumer – and especially if you’re being asked to pay $1,000 to $2,500 out of your own pocket for this information – you ought to be a bit skeptical about exactly how useful is this going to be.

I mean, the good news is, we’ve arrived at the point where we have DNA tests that are actually valid. These are not false positives. These are not bogus results that are going to be gone tomorrow.

But the bad news is, for most of these, we really don’t know on a rigorous scientific basis what to recommend to the people at higher risk for Alzheimer’s disease, for diabetes. I mean, for Alzheimer’s we have basically nothing at the moment to suggest to the high-risk people.

For diabetes, well, yes. But it’s kind of what you should do anyway, which is don’t gain weight and do some exercise and watch the calories in your diet. So, we should all be doing that. How does it change very much your circumstance to hear that your risk is even a little higher than the next person?

So, a careful, thoughtful examination of the evidence before writing a check would seem to be a very good start.

Yet, there are people – and, you know, I support the desire of some people to know this information. I don’t think we should in a paternalistic way try to get in the way of that, as long as we’re doing a good job of making it clear what the pros and cons are.

Now, one of the big concerns, which was that people would do this without realizing the discriminatory outcome, is now, I think, much greater – much less of a concern, as a result of this legislation. But of course, there are many other things that are outside of the discrimination arena that people need to think about.

SWAIN: Ten minutes left.

WEISS: I’m wondering what the impact of this is going to have on the insurance industry and on the way we cover health care in this country. I can imagine, for example, that someone who is not insured yet takes one of these genetic tests, realizes, oh, my God, I’m likely to get something terrible. And they quickly go out and buy insurance.

It’s hard to sort of – no one really loves their health insurance company, but let me express a little sympathy for them. I mean, this seems to put the insurance companies at a disadvantage, because suddenly people are going to be buying in when they are going to be most costly.

I’m also wondering, because right now I think insurance companies can use conventional information, like your cholesterol level, to help predict what kind of a risk you are. It’s interesting to me that genetic testing is being treated differently, and they’re not being allowed to use this.

What kind of pressure is this putting on the industry? And where might this take us in the way we’re going to cover health costs here?

COLLINS: It is an interesting situation. And some people have been concerned that this is what you might call genetic exceptionalism, that we’re treating genetic data as somehow really different.

Well, it is different in some ways, in that it is personal, it’s permanent, it connects to your family, not just to you. There are issues about this that may be separated from a lot of other medical information.

But you’re quite right. What is this going to – what are the implications of this in the longer term? I don’t think we are really clear where our health care system is going in the future, but this is one indication of what a strange system we currently do have.

This concern about adverse selection – basically, that people would go out and load up on health insurance, because they knew they were at risk for something, and the insurance company wouldn’t be allowed to use that information in setting a higher premium – that was raised a decade or so ago, when the momentum began to build for this legislation.

And a number of careful analyses were done, just to see how much of a risk is that. And actually, it doesn’t seem that that’s going to happen in any great numbers of people.

Again, the risks that we’re talking about from these DNA tests are modest. They’re not the sort of thing that would cause somebody who was otherwise going bare, to suddenly decide that they just have to have health insurance.

And it’s pretty clear. Most people, if they can afford health insurance, they’re going to have it anyway.

So, the evidence that this is going to destabilize the industry doesn’t seem to be there. And then, frankly, the health insurance industry has been pretty comfortable with this legislation, now, for several years. Now we finally have it, I hope they’re still comfortable.

I think there’s much more of an issue there when it comes to something like long-term care. If I know I’m at risk for Alzheimer’s disease and the company doesn’t, and I go out and buy long-term care insurance, you can see how that, economically, could be quite destabilizing. And we have not even tried to go there in terms of addressing this issue.

But in terms of health, though, I mean, this is just one more light shining on the mess we’re in. We, of all of the highly developed, civilized, industrialized countries, are living with a system that seems to imply that health care is really a privilege and not a right.

And if we are not comfortable saying that about genetic information, maybe what we’re really saying is, we’re not comfortable about it anyway. And perhaps we ought to think about moving in the direction – admittedly with great political difficulties ahead – to try to come up with a system where it’s not just your genetic information that can’t be held against you, it’s other parts of your health status, as well.

ROCKOFF: There’s also a question just about, you know, with the attention to health insurance costs and keeping them controlled, how do we get health insurance companies to embrace all these genetic tests that are coming online? I mean, there’s a lot of genetic tests out there, and very few of them are covered by insurance companies these days.

COLLINS: Well, here again, we have an opportunity to look at the way in which our health care system is designed. And prevention is generally not reimbursed as part of the plans that people sign up for. And that is clearly something we have to look at much more closely, not just because of genetics, but in general.

If you look at the way in which our health care costs are growing year by year, we can’t continue on this trajectory. We’re going to completely break the bank.

And one of the best ideas around to try to reduce that is to shift our attention more towards prevention, instead of paying for very expensive, intensive care unit stays for people who might have an illness that could have been prevented 10 years earlier.

To do that, clearly, we have to shift the reimbursement formula, so that prevention doesn’t fall entirely on the shoulders of people who are already economically strapped, and who, therefore, generally can’t afford it, or decide to spend their money on something else.

That’s going to be a big challenge, because maybe in the short run, that may increase our health care costs, in order to enjoy a benefit down the road of people who don’t end up with illnesses, because the prevention strategy was adopted.

Health insurers will be following the federal government’s lead on this, I suspect. And in terms of what the federal government does in Medicare and Medicaid – outside of a few specific examples where there’s been a lot of political pressure – it’s not the case that most preventive measures are reimbursed.

SWAIN: Does it seem like it’s going to create yet another societal have and have-not situation?

COLLINS: I worry about that. Again, our society, particularly the way we handle health care, is already in that situation, with more than 40 million people lacking health insurance.

But if it’s even more than just whether you have health insurance, it’s also whether you can add other services on top of that, if you can pay for them, and others get left out, then you’re increasing the distance between those whose health care is well-served and those who are not enjoying that.

SWAIN: We have four minutes left.

WEISS: I wonder, Dr. Collins, if you could address the issue of how all this emphasis recently on genetic roots of diseases, tests to identify those genetic contributors to disease, it seems to be leading to a sort of national or global heads based (ph) these days, where we’re again thinking that genes are the answer to all our questions and are the cause of everything about what we are. It harks a little bit back to the eugenics era from the beginning of the last century.

Do you worry about all this emphasis? And is there a need, perhaps, to pull back or remind people that there’s more to who we are and what our futures are than our genes?

COLLINS: I do worry about that, Rick. And obviously, with all of the excitement about discoveries in genetics, it’s hard as a scientist not to be pretty ebullient about all of these discoveries and their significance for medicine.

I’m a physician. The reason I got involved in the genome project was the hope that we would get to this point of being able to make these discoveries.

But I do see around me this sort of cultural invasion of the idea that genes are us, and that everything about us is somehow controlled by invisible strings of DNA that are actually managing and manipulating our every move. And that is absolutely insupportable on the basis of the science.

Sure, we can discover hereditary factors in disease, and maybe even some that affect human personality a bit. But the environment and our own freewill choices will continue to be a very powerful determinant of who we are and what our lives are like.

The study of the genome is not going to make freewill go out of style, nor is it going to explain the aspects of humanity that are much more than the materialistic view that often seems to creep into the dialogue. Our need for beauty, our interest in things like music and art, our spiritual nature – all of those will continue to be critical parts of what it means to be human, and will not be elucidated very much by the study of the genome.

WEISS: I’ve always liked the comment that I’ve seen attributed to the writer Isaac Bashevis Singer, who was asked whether he believed in freewill or predestiny, and supposedly answered that he had no choice but to believe in freewill.

SWAIN: Mr. Rockoff, last question.

ROCKOFF: Well, how much of the promise of genetic testing will be realized – or how soon will the promise of genetic testing be realized for those diseases like diabetes and heart disease, that depend not just on a single gene, but on the interaction between genes and environment? I mean, how far away are we from that?

COLLINS: We’re not far. Already, there are 16 different genetic risk factors that have been identified for diabetes, just in the last 18 months.

Now, collectively, they still don’t explain more than a modest fraction of the heritability. There are still other genetic factors yet to be discovered. But they’re going to come along fairly quickly.

With diabetes, though, again, the question is, is that the kind of testing that would be valuable to offer to everybody while they’re still young and not affected by the disease? What would you do with that information?

It’s clear that you can take somebody who’s predisposed and reduce their risk. That was shown in the diabetes prevention program that was funded several years ago at NIH.

So, you could make an argument that giving people that information and trying to motivate the highest risk people to really take advantage of those steps to reduce their risk would be a really good thing. But I’d rather see that documented and demonstrated in a real research study, as opposed to just saying, let’s go there and start doing it today.

SWAIN: And the final question is, especially since you argue for the value of a register or database of information, as we reach this threshold legislation, are there adequate privacy protections for individuals?

COLLINS: Privacy is a very tough problem in our culture. And I guess the younger parts of our culture are not as concerned about it, considering ways they are giving away personal information. But most of us would really like not to have our medical information available to people who shouldn’t be looking at it.

This bill has some privacy protections in terms of saying genetic information should not be made available, for instance, to employers. But it’s primarily a discrimination bill.

And this has always been a sort of belt-and-suspenders model, that you would try to maintain privacy as much as you can by putting in place things like HIPAA and things like the provisions in this bill about privacy. But you would recognize that isn’t always going to work.

Health insurance companies are going to have your medical information. They’re expected to pay for it. So, you also need the suspenders, which is to say, OK, if you have the information you can’t use it to discriminate, or you’re going to pay a penalty.

I think we have to keep going forward with both those pillars in mind. Otherwise, we won’t find that we’ve provided people with the protection they deserve.

SWAIN: Dr. Collins, thank you for being with us this week.

COLLINS: It’s been a pleasure.

(BREAK)

SWAIN: Rick Weiss of the “Washington Post” and Jonathan Rockoff of the “Baltimore Sun,” just completing a conversation with Dr. Francis Collins, one of the world’s top geneticists, based here at NIH, about the what seems like impending signing into law of an important piece of genetic legislation.

Can you explain to the people watching this how significant this really is? Are we really talking about threshold legislation here?

WEISS: I think it’s a very big deal for what it is. And it took a long time, and it does cut out a whole level of potential problems for people who end up getting genetic tests.

And frankly, I think it’s a great boon for the industry and for researchers, really. A lot of the motivation here has come from that sector, quietly. While what was in front of the curtain was a lot about what consumers need, a lot of that, I think, is still in the future.

But for researchers to get the people to volunteer for studies to figure out what genes contribute to what diseases, people wanted assurances that by participating in this study, they weren’t going to lose their insurance or be at risk in their employment.

A recent study that was done by the Genetics and Public Policy Center here in Washington found that something like 90 percent of people were worried about enrolling in research – genetic research – if these sorts of protections weren’t in place.

So, I think this takes care of that in a big way. But there are still, as Dr. Collins alluded to, additional issues that people have to think about, and protections that ought to be put into place by the folks in Washington to really make the emerging realm of genetic testing a safer place to exist in.

SWAIN: Can we expect things to change immediately, once the legislation is signed into law? Are people just poised, waiting for this legislation?

ROCKOFF: Well, actually, I talked to somebody yesterday who was poised and waiting to have the tests. They had a son with a rare genetic disorder, who they had refused to submit to testing, because they were fearful that he’d be dropped from their insurance coverage, or it would affect the father’s choice down the road to change jobs, or something like that.

So, I think that there are some people who will be affected, you know, immediately by the passage of the legislation when it happens.

But I think, as Rick mentioned, and I think as Dr. Collins referred to, I think the biggest gain will be going forward, as the research picks up. And as Dr. Collins said, it’s not that far off when, you know, major common diseases like diabetes are going to have genetic tests available for them.

And so, when that comes, I think that’s when you’re going to see the real benefit of this legislation, because then, when a large majority of Americans face the decision about whether they should undergo genetic testing for, you know, various forms of cancer or diabetes or heart disease, they won’t have to think about, you know, sort of the fear of losing their insurance or losing out on a promotion.

SWAIN: But it sounds as though it also has layers and layers of consequences, some of which we’re not even sure of as a society yet.

WEISS: Well, there is the whole issue of what you’re going to do with this information and whether you want it, which doesn’t really get addressed by legislation. I’m not sure how it would.

But people are going to have to start getting used to the fact that, to some extent, their future is being unveiled to themselves.

Now, you know, you don’t want to get too genetically deterministic, as Dr. Collins noted. But still, this is information that does tell you a little bit more about what your risks are and what life might be like. And a lot of people may not want that information.

There’s a real question of whether these tests are going to start showing up in your routine profiles, because the doctor thinks it’s going to help him or her make some decision for you, or the insurance company might want it for some purpose other than to discriminate.

And there is a right not to know, that some bio-ethicists have talked about, that maybe is going to have to come a little bit more to the fore. We’re so used to wanting to know more and to – you know, we’re so interested in our health and what’s going to happen to us. It’d be interesting to see if we might start to reach our limits in that regard, as almost too much information becomes available.

ROCKOFF: Yes, a good example of that is, there’s already a genetic test for Huntington’s disease. And it can tell you, oh, yes, you’re at risk of Huntington’s disease. So you will know in 10, 15 years, you’re going to develop this debilitating condition. But there’s no treatment for that.

And so, that raises all these sorts of questions about, you know, what should you know, and when should you know it. Do you want to know that you’re practically sentenced to having this disease down the road? Because that can have profound consequences on the way you live your life. And so, we need to think about these sorts of issues, as well.

WEISS: One thing really interesting with the Huntington’s disease test, before that test was invented a few years ago, there were surveys done, and people were asked, if there were a test that could tell you for sure whether you’re going to get this horrible dementia in mid-life, would you want to know? Would you take the test?

And a majority of people said – a great majority said – yes, of course. I could plan my life better, figure out how to pace the rest of my life.

When the test actually got invented and was made available, almost nobody wanted to take it, actually.

So, people might think one thing. But when push comes to shove and you really are faced with these decisions, it’s almost stultifying. You don’t know really what to do with it.

ROCKOFF: If I could …

SWAIN: Your final comments?

ROCKOFF: If I could just add one more thing to that. I mean, as Dr. Collins mentioned, we still have questions about the quality and the accuracy and the scientific validity of these tests.

And so, if you’re somebody taking a Huntington’s disease test, and you’re going to be relying on this life-changing information, you want to make sure that the information is accurate. And we still have a lot of road to travel before we get to that point.

SWAIN: Well, on that note, and as a close, it’s just interesting. We’re marking the five-year anniversary of the announcement of the full decoding of the human genome. This feels like yet another threshold in this whole scientific quest. It would be interesting if we could gather in five years and see all of the new questions that arise as a result of this.

Thank you so much for being with us this week.

WEISS: Thank you.

ROCKOFF: Thanks.

END