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Burden of Proof

Can Law Catch Technology in Race to Unlock Biological Secrets?

Aired June 27, 2000 - 12:30 p.m. ET



WILLIAM J. CLINTON, PRESIDENT OF THE UNITED STATES: With this profound new knowledge, humankind is on the verge of gaining immense new power to heal. Genome science will have a real impact on all our lives.



BILL HASELTINE, CEO, HUMAN GENOME SCIENCES: I think the beneficiary will be the patient. Five or 10 years from now, there will be many new ways to treat and cure disease, and the impact on the patient, I think, will be very pleasant.



TONY BLAIR, PRIME MINISTER, UNITED KINGDOM: The most important thing for us is to try and get the balance right between the role of science and the role, if you like, of society or governments. The role of science is to inquire and to discover, and it's the role of society and government on behalf of society to make judgments about what we then do, how we respond.


ROGER COSSACK, CO-HOST: today on BURDEN OF PROOF, scientists announce a breakthrough in decoding the human genome, but can the law catch up with technology in the race to unlock biological secrets?

ANNOUNCER: This is BURDEN OF PROOF, with Greta Van Susteren and Roger Cossack.

COSSACK: Hello and welcome to BURDEN OF PROOF.

The completion of a rough draft of the human genetic code promises to revolutionize the way diseases are treated and prevented. The breakthrough is an international effort taken on by competing public and private firms.

GRETA VAN SUSTEREN, CO-HOST: But as scientists argue over who will own this powerful new information, others are wondering if the legal system is prepared to handle its potential misuse. Legislation has already been introduced on the Hill to protect workers from genetic discrimination by employers and health insurance companies.

COSSACK: And joining us from Philadelphia is professor of bioethics David Magnus, and in San Diego, the general counsel for the Salk Institute, Thomas Jurgensen. And joining us from Rochester, New York is Democratic Congresswoman Louise Slaughter.

VAN SUSTEREN: And here in our studio, Eric Pouncy (ph), genetics professor David Kirby, and Stephen Potts (ph). And in our back row, Melissa Miller and Banni Olabi (ph).

Tom, first to you, in your most simplistic terms, describe what this discovery is.

THOMAS JURGENSEN, GENERAL COUNSEL, SALK INSTITUTE: It's a map for the entire code of the genes of the human (UNINTELLIGIBLE) great first step in the process of...


VAN SUSTEREN: We're having audio problem, so let me pose that question to you, David Kirby. You teach genetics. In the most simplistic terms, what is this?

DAVID KIRBY, GENETICS PROFESSOR: Well, as he started to say, this is a map of the human genome, meaning if we read that map, we should be able to construct from it all the genes that make the human being.

VAN SUSTEREN: All right. Why today? What's -- what's -- I mean, 1953, we have the discovery of DNA. Why today? Why didn't this happen 10 years ago or 20 years ago?

KIRBY: It's a technological problem. DNA sequencing was first started in the 1980s and it was a very long laborious process, and it took technological breakthroughs -- a lot from actually Craig Venter, the president of Celera -- that got us to the point where we could do this very quickly.

VAN SUSTEREN: Is it that they're 3.2 billion that have to be sequenced? Is that it? I mean, we just needed a computer to help us out: is that why it took so long?

KIRBY: Well, the computer was part of it. When you're talking 3.2 billion, that is much larger than most people can imagine, and to line all those sequences together cannot be done manually. You needed advent -- the advent of the computer in order to get that happening.

COSSACK: David Magnus, what does this actually tell us about ourselves? I mean, is this the breakthrough that now means if I -- I can find out about myself, and if I am one of those people that doesn't make cholesterol, I can eat as many rich foods as I want. Is this the silver or golden bullet which is going to make my life wonderful, or on the other hand, make it not so good? DAVID MAGNUS, PROFESSOR OF BIOETHICS: No, not quite. Actually, human beings are a product of both our genetic makeup and our environment. So simply having the genetic information isn't sufficient to be able to determine exactly what's going to happen: whether we're going to get heart disease or we're going to get cancer or so on. There are going to be environmental influences that play a role.

However, what this will do is tell us something about the susceptibility that some people have to being more likely to get colds, how likely they are to develop certain diseases -- not right now, not in the short term, but in the long term as we start to find more and more about the genetic basis and the genetic contributions to a lot of traits and diseases.

COSSACK: OK. So now you know that I have -- I have a susceptibility toward colds. Can you cure me? Can you do something about my susceptibility?

MAGNUS: Chances are that in this particular case what this technology is going to lead to is more diagnostics in the short term rather than therapeutics. Eventually, we hope to be able to develop gene therapies and other kinds of treatments out of the knowledge that we're producing. But for the short run -- and I think for at least the next 10 years -- what we're really going to have is a real increase in the ability to do genetic testing, to be able to find out diagnostically more about risks rather than being able to do anything about it.

VAN SUSTEREN: David, I took notes -- let me just tell you this -- for the past couple of days, believe me, trying to catch up, trying to figure this out. And talking about prediction of disease is one thing; prevention and treatment and understanding of diseases are the other things that are sort of the main points here.

MAGNUS: Right.




WILLIAM J. CLINTON, PRESIDENT OF THE UNITED STATES: We must guarantee that genetic information cannot be used to stigmatize or discriminate against any individual or group.

Increasing knowledge of the human genome must never change the basic belief on which our ethics, our government, our society are founded. All of us are created equal, entitled to equal treatment under the law.


VAN SUSTEREN: The human genome is nature's blueprint for creating and maintaining human beings. The genetic map could be used to find new cures for diseases, but in the wrong hands it could also lead to an invasion of privacy.

Congressman Louise Slaughter joins us now from Rochester, New York.

Congresswoman, is there a concern about privacy in connection with this very exciting leap forward in genetics today? And if so, what is it and what are you doing?

REP. LOUISE SLAUGHTER (D), NEW YORK: Well, there certainly is. And five years ago, when we started to map out the human genome, a bunch of us decided we better try to make sure that social policy could keep pace with science. So far, we've been totally unsuccessful. But we have over 218 sponsors on a bill to protect genetic privacy and basically to protect a person from losing their health insurance or having the rates and conditions change because of your genes.

Now one statement I'd like to make, if I can, I think it's important to know that this effects every human being on the globe. Each of us at this point is estimated to have between five and 50 faulty genes. And we know it first started with women with breast cancer, when the VRCA1 gene was discovered. We do know of lots of women who were afraid to get the test to see if they carried the gene, which would make a lot of difference in their lives, because they were afraid of losing their health insurance. We know that it has happened. People have been discriminated against at work.

As a matter of fact, in the 1960s, the federal government itself discriminated against persons who carried sickle cell anemia.

VAN SUSTEREN: So in light of that, what does the bill specifically do to stop that?

SLAUGHTER: The bill forbids the changes and also has a penalty involved saying that -- we say that the information on one's genetic makeup belongs to the person, and leaking it without their consent, there is a penalty involved. That's necessary to protect that privacy.

We have found some resistance, obviously, I think again a lot of it is that people don't understand that we're talking about them. Once we could really get the message across that it involves every one of us, including the president of the health insurance company -- he has the same problem we all do, some faulty genes -- but also to have people understand that even carrying a gene does not necessarily guarantee that you're going to get the condition, and if you do, it could be years away.

So it's the rankest form of discrimination to drop health insurance or raise the cost so high that people can't afford it because of their genes.

It would also, I think, be a tragedy if, after the government has spent billions of dollars on this research, that it could be used against the citizens and not for them. COSSACK: David Magnus, it's an interesting point, I suppose, the notion that even though you have this gene it doesn't necessarily mean, a faulty gene, that something is going to result from that. Is it a fatalistic kind of approach to say that if I have a faulty gene or 10 faulty genes, I'm going to be an anti-social person? Suppose I wanted to go to court and use the gene defense as a defense and say, look, I had no control over myself?

MAGNUS: Well, I think that is a fallacious argument. I mean, its clear that genes don't determine who we are. Think about plants. If you don't water them, they don't grow, though at the same time there's a genetic basis to how high they grow, to some extent.

But I think the point about privacy, I think, is something worth getting back to because in the long run, I think, trying to do this legislatively is going to turn out to be a very, very daunting task because drawing the line at what counts as genetic information, which kind of information is going to be restricted, which kind of information is it you can't discriminate on the basis of, is actually a very difficult line to draw.

Right now, the state laws that have been passed dealing with this are all over the map in terms of what counts as a genetic test. And if you defined it fairly narrowly, as many states do, as simply information where you look at sequence data, that really won't in the long run offer as much protection as people think they will -- think it will, because in the end, once you start having information about the genes, you can often devise tests that look for protein products and get around the legislation.

So the standard test for cystic fibrosis, the sweat (ph) chloride test, would not count as a genetic test in many states. So this legislation really doesn't always do the purpose it's aimed to do.

COSSACK: All right, let's take a break. Up next, will employers and insurance companies discriminate against people whose genetics are different than ours?

Stay with us.


COSSACK: Lawmakers are already discussing legislation that would protect workers from genetic discrimination. They say the new technology could put their health insurance and jobs at risk.

Tom, as in terms of your -- as a counsel for the Salk Foundation, is there certain kinds of legislation that you would like to see or that you would be opposed to that you feel that would hinder the progress of where we are already?

JURGENSEN: I think in general I would like to see some protections, the type that are we are talking about (AUDIO GAP)

COSSACK: You know, it seems like...

VAN SUSTEREN: We're still having those audio problems.

COSSACK: You know, we may have -- we may be able to map the human genome, but we can't get Thomas from San Diego.

VAN SUSTEREN: But let me ask -- David, let me ask you the question, if you go to the barber and get your hair cut and you drop hair on the floor and then someone comes in, some ambitious person picks up some of the strands of the hair, can the person go home and -- I mean, to someone who is obviously trained in the field, and determine your genetic make-up, map you?

KIRBY: They can get your sequence from any of your bodily parts, whether it be skin cells, hair.

VAN SUSTEREN: Could you -- so you could predict something like whether they are going to get Alzheimer's disease, like if we wanted to do that like with politicians or -- who have important jobs, or surgeons, we could do that?

KIRBY: Yes, if you wanted to. I mean, it's the same with doing DNA fingerprinting for criminal activity, any bodily fluid, any blood, any semen, they could get your genetic make-up.

VAN SUSTEREN: What about that, Congresswoman Slaughter, you talk about discrimination in health insurance, but what about someone taking someone's sort of deposited DNA, whether it's in hair or whatever, and then going out and almost doing an investigation of someone and putting it in the public domain?

Congressman Slaughter, this is your bill. Does that -- do you have any sort of protections?

SLAUGHTER: No, that's -- frankly, we are not looking to stop people from trying to pick up hair clippings somewhere. We are really trying to make certain that people can keep their health insurance and keep their jobs, and you know, it really is a serious issue that both Dr. Collins and Dr. Venter say that they believe it's important, and Tony Blair said this morning, the privacy component is very important.

COSSACK: Representative Slaughter, you said that you have had difficulty getting -- you've been working for a number of years and you have had difficulty with this legislature. Who could have posed something like this, and why?

SLAUGHTER: Committee chairs who don't want to rile up insurance companies. We had 220 co-sponsors on one of the bills that we have, including five committee chairs from the Republican Party, very fine upstanding souls, but we still couldn't get a hearing.

Everybody has tried, Democrats on the committee, John Dingell sent a letter, nothing helped. I think that Daschle is -- Senator Daschle is going to have a very good shot at getting his bill passed through the Senate and I hope that puts more pressure on the House. And if anybody out there wants their genetic privacy insured, I would urge them to contact their congressperson and tell them to get with it. VAN SUSTEREN: David Magnus, there has been -- the president of the United States and Tony Blair in England have both talked about the fact that they don't want to have this information patented, but the application perhaps be available to be patented. What do you think about making this information available to everyone?

MAGNUS: Well, in some ways, the information is available to everyone. There -- the effort from the publicly-funded Human Genome Project is going to be available and it is available through Genebank. And even the private effort from Celera is also going to be available, you just have to pay a fee to get access to the way that they have arranged the information. But neither Clinton nor Blair have challenged the basic fundamental right to patent genes or disease genes, the association between genes and disease, and I think that's also very problematic.

Really, the fact that a private entity essentially, in spite of all the nice talk that people are saying, they really did win the race to the human genome. It was really Craig Venter and Celera that made it possible to develop the technology that led to this event today. And the fact that this was done privately rather than publicly is a signal that we are moving into a new era in which increasingly private interests and the values of business are trumping the values of both medicine and science.

VAN SUSTEREN: Why do you say that? I mean, shouldn't...

MAGNUS: Well...

VAN SUSTEREN: If they've spent an awful lot of money and time on this and risk, I mean, shouldn't they have some benefit from this?

MAGNUS: No question, and I'm not really attacking Celera per se as some more general kinds of worries that a number of us have about general patterns. For example, you mentioned, or somebody mentioned earlier the BRCA genes, the discovery of the breast cancer genes, BRCA one and two.

In both of those cases, there is patents on those -- those are held by Myriad. And because they have been able to restrict access to testing for breast cancer, they are able for the first time to dictate what counts as the standard of care. Rather than have that done on the basis of medical and expert medical opinions, that is really done on the basis of patent rights.

VAN SUSTEREN: All right, and that's all the time we have for today. Thanks to our guests and thank you for watching. Join me tonight on "NEWSSTAND." My guests will be taking your questions about the Human Genome Project. That's at 10:00 p.m. Eastern.

COSSACK: You can also weigh in on the morality of the Human Genome Project on "TALKBACK LIVE" at 3:00 p.m. Eastern Time. And we'll be back tomorrow with another edition of BURDEN OF PROOF.



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