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| GENETIC ETHICS | |
 July 3, 2000  |
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Experts ponder the ethical implications of mapping the human genome. The Health Unit is a partnership with the Henry J. Kaiser Family Foundation. |
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We're joined now by three people who've been thinking about the ethical implications of mapping the human genome. Alexander Capron is a professor of law and medicine at the University of Southern California, and a member of the national Bioethics Advisory Commission, which advises federal agencies on these issues. Andrew Kimbrell is the director of the International Center for Technology Assessment, a think tank on technology issues. He's also author of "The Human Body Shop: The Engineering and marketing of life." And Glenn McGee is professor of bioethics at the University of Pennsylvania School of Medicine. He's also the editor of the "American Journal of Bioethics." |
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| Talking it through | ||||||||||||||||||||
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RAY SUAREZ: Well, Professor McGee, a lot of the articles that you could read over the last week would finish by saying, "well, we have a lot of talking to do about this, and we as a society have a lot of decisions to make." But that's such a big conversation. Where do we start?
What we've got is an announcement of a low-resolution map, the kind of map you couldn't use to get to the grocery store, but that suggests incredibly interesting geological and social features that we now are going to begin to look at, and thinking at the level of ethics, policy, and even religion about the genome will become a central part of the conversation in the 21st century, but the terms are going to be different. Instead of talking about the code of codes, we're beginning to develop a new vocabulary that's more about where do we look and how much money does it take to get there once you have the map? RAY SUAREZ: Andrew Kimbrell, where do you want to start this conversation?
And President Clinton noted during this announcement that he had done, and quite correctly, and he's done a very good job in having the executive order saying we really shouldn't be using this to discriminate, you know, people in employment. We shouldn't say, because you may be predisposed to a type of cancer, perhaps an emotional illness, that therefore you should be deprived of a job. But what he didn't mention, and I think, you know, when we get beyond lip service and highfalutin language, is what about insurance companies? I think one of the most serious questions we face is, this information right now, there's no way to protect it that we have yet from insurance companies, and you're not going to get a job, if you go to your employer and they find out you're predisposed, let's say, to a certain cancer, and the insurance company says, "we're not going to cover this person," then you still would be deprived of that employment. So we need to go pretty much state by state and stop just talking about it and make sure, as we go through this very important journey, that we make sure that insurance companies especially do not have this information so that they can actually discriminate against us based on our genetic predispositions. RAY SUAREZ: Well, Professor Capron, Andrew Kimbrell put some pretty big issues on the table, but by saying "we have to have a conversation," that kind of presumes the public's even in on it in the first place. Is there a way for all of us who are involved to be stakeholders in the decisions that are eventually made?
A bigger question, though, that I get concerned about, and I think, again, some of the scientists have begun to recognize how important this is, is the terms that we use that convey a notion that to know the genome is to know the person. Just the other day, in making the announcement, some people used the term "the genetic blueprint" or "the book of life," "the human instruction book," and a lot of newspapers and the media have echoed that kind of language. When I think of a blueprint, if I read a blueprint, I can imagine what the building's going to look like, and it's going to be built according to the blueprint. It's quite determined. That is a very, very poor metaphor for what the genetic code means because, in almost every case outside of a few very heavily determined and very rare genetic conditions, the kinds of thing we used to think of as genetic diseases, outside of those, all the important characteristics and most of the kinds of diseases that worry us-- heart disease, cancer, and so forth-- have a genetic contribution, but the paths that an individual is going to take with that initial starting set of genes is extremely varied and depends upon choices that are made, both by the individual and the family, but by the community, and nothing could be worse than for the public to come away from this with a sense that, once we know the genes, we know the person, that you could have a compact disk that would have your genetic code on it, and it would be the same as you. It's not the right idea at all. |
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| Plenty of time... | ||||||||||||||||||||
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RAY SUAREZ: Okay. Well, if we talk about overblown language, and you cite some of the hyperbole that's been in the press coverage lately, does this mean that in fact that the timetable for some of these discoveries is pretty long, meaning that we, as legal communities, as medical communities, as a people, have a little time to sort this all out?
RAY SUAREZ: Well, let me turn to Professor McGee at this point, because we've just heard the description of a long timeline, but the business-based model that we've been using for making a lot of these discoveries means that people are patenting things before they know what that do. So does that mean that the timeline for decision-making is even shorter?
The biggest news isn't much about the accomplishments in genetics; it's about the way the accomplishments in genetics were announced and what it meant, for example, that Craig Venter, who could very well have published his announcement by himself, announcing in effect that a company had mapped virtually the entire genome by itself, but instead he elected to share the credit with the federal government at some significant cost in terms of the value of the stock of his company, but at exactly the same moment, the federal government, which is focused on a specific approach in genomics, is in a very difficult situation as it struggles to cope with this new Craig Venter model, which is to license out information to biotechnology companies and pharmaceutical companies if you want early access. So while it may be a long time before we see lots of tests coming out of the genome project, what we've already call a Copernican shift in what it means to be a scientist. Today genomics is a corporate endeavor, and virtually all of the activity we'll see in the next few years that results in significant therapeutic progress will come not from the federal government, but from biotech companies and their capitalizations. So I'm watching the market as much as I'm watching to see what happens next on what used to be the front-page news, which was our federal Apollo mission. RAY SUAREZ: So, Andrew Kimbrell, does this model promise faster innovation, in fact?
GLENN McGEE: I guess that's the point... ANDREW KIMBRELL: ...What professor Capron said, which is that we shouldn't make a mistake here; that because we have this very primitive map of the sequences that make up human genes, that somehow that this is the key to understanding human behavior. There's some very dangerous public policy conclusions that could flow from that. For example, the University of Maryland recently had a conference. They talked about the criminal gene. People have talked about the gene for violence. People have talked about IQ genes. People talk about genes for sexual orientation. Now, most of these claims have been completely, you know, shown to be not true, but the important thing, in an age when we have a lot of people pressing for less and less government programs, I would hate to see sort of a new revolution where it's now nature over nurture, where we say, "hey, we don't need poverty programs, we don't need to end discrimination, we don't need to understand the roots of violence in some of our social problems because it's all in the genes. All we need to look at is some future society where we'd get rid of a couple of these genes, we'd solve the problems." It is still the environment, still our social responsibility to control these problems. They're never going to be just in our genes.
RAY SUAREZ: Professor McGee, I know you've been wanting to get back in here. Your final thoughts? GLENN McGEE: Well, I agree with Professor Capron that, if we're looking for a human nature message, there's more in common that we hold than there are differences, but, to strongly disagree with Alexander Kimbrell, I think it's clear that the Patent and Trade Office has to rethink its patenting structure. But I think it would be a profound mistake to sort of opt for metaphysics and try to make some strong argument against the patenting of genes when the real focus should be on exactly what we're talking about-- that is, broader social remedies and developing good tactics to train scientists, to train the clergy, to train the general public, and to really build strategies for conversation so that there can be a public dialogue about more than just genomics, but rather about what's the right business plan, what's the right relationship between business and the university, and what's the right overall goal for the human race in terms of achieving a quality and preventing genetics from being used for these bad eugenic ends. RAY SUAREZ: Well, we're going to have to consider this the first of many conversations on this topic. Panel, thank you all. GLENN McGEE: Thank you. |
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RAY
SUAREZ: Last week scientists announced they had finished a rough map
of all human genes. This map has been hailed as a scientific milestone
which will help scientists understand diseases and how the human body
works. It's also a turning point that could stretch our sense of possibilities
and cause us to rethink what it means to be human. 
GLENN
McGEE, University of Pennsylvania: It's difficult to know where to start
or even what language to use. We've had ten years now to think about
how to educate about genomics and the genome as a part of both what
makes us who we are, how we make children, and what it really means
in terms of developing business in society, and what we've learned is
that it's extraordinarily difficult to find the right metaphors to explain
changes, discovery, and potential possibility and danger. Here the announcement,
which has been sort of framed in terms of the moon landing, a virtual
completion of a map of the genome project, I think really the more apt
metaphor to use is cartography. 
ANDREW
KIMBRELL, International Center for Technology Assessment: Well, I think
the most immediate threat that we see is really one about privacy. I
mean, here we have the most intimate knowledge you can imagine about
each of our physical or mental potential illnesses or disabilities or
problems, and who is going to have access to that information? I mean,
this is really a crucial question as we proceed down this journey and
discover more about the 100,000 or more genes that make up the human
person. Who will have access to that? Should your employer know all
the diseases and problems that you may be genetically predisposed to?
What about the insurance companies? Should they have this to be able
to calibrate your insurance based on whether you have a bad genome or
a good genome? What about the government? Should they have access to
this? 
ALEXANDER
CAPRON, University of Southern California: A lot of that has to begin
with the scientists themselves, and I think with the language they use
to describe these discoveries. The language has been somewhat overblown.
I agree with Glenn McGee that what we have now, as the principal people
involved have said to us, but they sometimes don't say it as strongly
as they should, is just the beginning of a process that's going to take
a long time. I also agree that one of the issues that the public is
going to be most immediately concerned about is who controls all this
information, both who controls it in a commercial sense and who controls
our private information that comes out, because for quite a while, we're
going to know more about genetic propensities and risks than we are
about the ways to intervene to fix them, either at the level of the
proteins-- that is to say, the gene products; say, insulin for a person
who has a diabetic problem-- or eventually at the genetic level. 
ALEXANDER
CAPRON: Well, we're going to have... I mean, a lot of what has been
found out now, even as supposed genes have been discovered and attempts
are being made and have been made successfully to "patent"
those genes, which doesn't mean that the patent holder owns the genes
in your body, but owns them as a purified description of a genetic code,
a lot of that we don't even know. The person who's attempting to have
the patent on that doesn't know what that gene does in the body. And
genes aren't important in and of themselves. They're only important
as they tell cells and then cells together make an organism to function.
And so, knowing what all this code means is a process that's going to
take a very long time. Individual pieces will be found, particularly
where people are pursuing a particular genetic sequence because they
have reasons to believe it's connected with a known problem in human
functioning-- again, take diabetes or something like that-- but finding
it out for all the genes, in fact, there isn't any agreement today.
The estimates go from about 35,000 to about 150,000 as to how many genes
there are in this supposedly decoded genome. 
GLENN
McGEE: I think it's much shorter. Professor Capron really does put his
finger on the point about how the development of genomics will take
a while to result in the development of anything like a kind of comprehensive
diagnostic strategy for any disease other than the sort of few single-gene-specific
disease disorders that we're focused on now, or let alone gene therapy,
but in the short term, things really already off the ground and well
down the road, in fact, toward a business plan toward genetics. You
know, some... thinking at the end of the week about what we've been
through this week, it's interesting.
ANDREW
KIMBRELL: Well, I mean, I think first of all, Craig Venter very well
should have given the government credit because that's where he started.
His life in genomics started with many years working for the NIH's program.
He then took that federally funded, our taxpayer-funded research, sold
it to a private company, and moved all of his laboratories over there.
So he owed us, all of us taxpayers, at least that when he did it. But
I also think we need to talk about this whole idea of patenting, of
a corporation or several corporations owning the 100,000 or more genes
that make up the human body, of patenting these genes. Over a thousand
of these genes have already been patented, and I think that's an outrage.
This is a common heritage, and I think Tony Blair said this, this is
the common heritage of all of us. Certainly every researcher in the
world should have access to the material. That it would be locked up
as the patented, protected, copyrighted material of a few corporations
is really unacceptable. I also want a second, very strong... 
ALEXANDER
CAPRON: And, you know, and the difficulty here is that the social interventions,
we already know, are very messy-- getting the right data, figuring out
what the causes are and so forth-- and I agree that the temptation to
say, "well, if we could just intervene genetically," or, more
pessimistically, say, "what's the use of trying to intervene socially,
it's all in the genes anyway," that group-- never ourselves, of
course-- that group, whatever it is, has these problems, and it's not
the environment, it's not bad schools, it's not violence in the neighborhood,
it's not pollution, it's just the way things are. 
