Home   |   Register               Web Search: by Google
channel navigation
  Weekly Schedule
  Video Archive
Discussion Areas
  Biz & Tech
  The Post Magazine
  Food & Wine
  Books & Reading

Frequently Asked

Contact Us

About the site


Health Talk: The Future of Medicine
Hosted by Abigail Trafford
Washington Post Health Editor

Tuesday, December 28, 2 p.m. EST
Abigail Trafford
Abigail Trafford
As we rapidly approach the new year, the field of genetics has become more prominent. What lies ahead in the field of medicine?

Dr. Francis S. Collins, director of the National Human Genome Research Institute at NIH, was our guest for the year-end edition of "Health Talk."

Please read the transcript below.

Abigail Trafford: Hello everybody. The big news in health is longevity. In the next century researchers expect to extend the lifespan. Key to this revolution in aging is the field of genetics. The explosion in gene sciences promises to change the medical landscape of the future. But how? And will everybody get access to the fruits of genetic research? Here with us is Dr. Francis Collins who heads the Human Genome Project at the National Institutes of Health. Do you want to know what lurks in your genes? Send us your questions and comments.

Abigail Trafford: Welcome Dr. Collins. We're here to talk about how the field of genetics will dominate medicine in the next century. Let's start with the good news. In 10 years you predict that there will be genetic tests available to detect 25 medical conditions before they develop--and there will be interventions to reduce the chances of disease. Can you give us some details? What conditions? What treatments?

Dr. Francis Collins: Sure. I'd predict that in the next ten years we will have genetic tests for predisposition to several common cancers (breast, colon, prostate), diabetes, hypertension, coronary artery disease, asthma, and mental illness. In those instances where early detection can be lifesaving (cancer is a cardinal example) this kind of individualized risk information could be really helpful -- allowing each of us to design a program of preventive medicine that is just right for us. And that's just the beginning -- these gene discoveries will also allow the development of new and more effective medicines for those who fall through the preventive medicine safety net.

Abigail Trafford: You predict that in 30 years, people will be able to get their complete genetic blueprint for $1,000. What will it tell you about yourself and your future?

Dr. Francis Collins: All of us are at risk for something, in fact several things, based upon "glitches" (i.e. misspellings) in our DNA sequence. Knowing what your own set of glitches is allows you to make predictions about which illnesses are most likely to occur down the road, and which ones are less likely. Note, however, that most of these predictions are relative risks, they won't be all or none. Nonetheless, this kind of information can be enormously useful in planning a program of lifestyle, diet, and medical surveillance that increases the likelihood of staying well. It's like reading your own medical diary ahead of time. Of course, not all of this information will suggest a beneficial intervention -- and people will have to decide whether they want to know those bits of information or not. That should be a personal choice, not imposed by anyone.

Abigail Trafford: There are high hopes for gene therapy--what exactly is gene therapy? When will it be successful?

Dr. Francis Collins: Gene therapy is an exciting new approach to treating disease where the treatment is actually a gene itself. An example: cystic fibrosis (CF) is an inherited condition where a gene on chromosome 7 isn't working the way it should, leading to problems in the lungs and other organs. If you could deliver a normal copy of the CF gene to the lungs of an affected individual, that would correct the defect. The problem is one of efficiency -- it's REALLY hard to get DNA, a large, charged, complex molecule to go to the right place in a very large number of cells in the airway, correct the problem, and then stay in place and not get lost. The field of gene therapy has had more than its share of disappointments over the past decade, particularly so in the last few months with the first death of a volunteer for a research protocol.

But I believe that over the course of time gene therapy will find an important clinical niche -- first for some relatively rare conditions such as hemophilia, ultimately for common illnesses such as cancer, heart disease, even AIDS. We just have to be patient while the very challenging research problems are tackled one by one.

Abigail Trafford: But if you know all about your genes, won't some of the information be disturbing? And how do you protect yourself against discrimination. If you have the gene that says you have a high risk of colon cancer, who will give you life insurance? Hire you for a job?

Dr. Francis Collins: VERY important questions!!! We all have glitches in our DNA. We clearly don't have any choice in the matter. Virtually all experts who have looked at this situation have concluded, therefore, that it is unjust (and unworkable in the long run) to have predictive genetic information used to deny health care or a job. And yet we don't yet have those protections in the kind of rigorous way the public wants and deserves. Several states have taken effective action -- but the only real long term solution is effective federal legislation. Both parties and both houses agree. So does the Administration. I am hopeful (but not yet confident) that 2000 will be the year where we solve this problem in the U.S.

Abigail Trafford: You predict that in 30 years we'll know all the genes involved in the human aging process. What will that tell us? How will that information lead to a longer lifespan? Is there a genetic limit to how long a human being can live?

Dr. Francis Collins: That's a guess, of course. We don't know how many genes will be involved in human aging -- but a recent mouse experiment in which manipulation of a single gene extended the life span by 30% indicates that it may not be huge number. The presumption is that programmed aging is one of evolution's requirements for species to gradually change over time -- but that would not require a large number of genes to be at work. Without manipulation, it seems that the maximum human life span is about 100 years. It is possible that could be extended if we understand the pathways of aging better -- but there are many ethical questions that would have to be addressed before applying this on a broad scale. Most importantly, what would the quality of this extended life be like?

Abigail Trafford: Have there been instances where people were discriminated against because of their genetic risk of a disease? What recourse do people have without federal legislation?

Dr. Francis Collins: Paul Billings has recorded over 100 instances of genetic discrimination in health care of the workplace, and this is probably just the tip of an iceberg -- most people in this situation are afraid to come forward. In some instances there are protections that can be invoked -- for instance, 23 states have passed legislation to prevent this (though that legislation is of varying quality). Also, the EEOC has issued guidance that using predictive genetic information to make a hiring decision violates the Americans with Disabilities Act, but that ruling has not yet been tested in the courts. Unfortunately, short of federal legislation, there are too many loopholes.

Abigail Trafford: What about permanently altering the genetic blueprint of a person? Let's say you have the gene for a devastating disease such as Huntington's, which eventually destroys a person's mental capacity. Can gene therapy completely eleminate that gene so that it will not appear in future generations?

Dr. Francis Collins: Altering a gene in "the germline" (which means that it would affect future generations), while it might seem to be the most effective way to eliminate a disease altogether, has a number of ethical complications -- and at the present time those are considered so substantial that this kind of research on humans is not allowed. Among these concerns are safety -- suppose by fixing the Huntington's disease mutation you are also creating some other unexpected problem , and you might not discover this for several generations. In so doing, you have put future offspring of this person at risk, without their permission. There is also the "slippery slope" argument, that once we start doing this for terrible diseases, we might be tempted to do so for traits like obesity or height. Most people (including me) find that deeply troubling. So for the time being, the focus is NOT on germline therapy, but coming up with other ways to prevent or treat the disease.

Abigail Trafford: Let's say you take a genetic test that says you are at risk of manic depressive illness. What interventions are available today that prevent disabling episodes of the illness?

Dr. Francis Collins: Good question. While we don't understand this illness as well as we wish we did, knowing you're at risk can still be life-saving -- the major risk of death in this disease is suicide, and therapy (lithium) is quite effective in moderating the broad mood swings that can lead to a suicide when the depression sets in. Sadly, some people with manic-depressive illness commit suicide before they are ever diagnosed. Having a predictive test might help prevent that. I don't mean to minimize, however, the consequences of learning this information for an individual's view of themselves.

Abigail Trafford: Today, most people know what kinds of hereditary risks they have from looking at their parents. How will genetic tests improve on family history?

Dr. Francis Collins: Family history will not go out of style! That will still be a critical part of assessing one's future risks of illness. But family history can be a rather crude tool -- if I have a strong family history of prostate cancer, I might not have inherited those particular glitches, and my risk might be no higher (or even lower) than the average -- a genetic test in 10 years or so would be able to tell that. Furthermore, I might be at risk for diabetes and have NO family history of that. The combination of the family history and the genetic test will be a more precise measure of risk than either alone. Still, we must expect that these predictions will not be all or none -- the environment plays an important role in many of these illnesses. If I have a low genetic risk of coronary artery disease, but smoke 3 packs a day of cigarettes, I may still have a heart attack at age 65.

Abigail Trafford: There's an old wives tale that good and bad genes travel together. That is a disease gene is often accompanied by a protective gene. What is the truth to this?

Dr. Francis Collins: Someone should write a book about old wives' tales (maybe you, Abby?). Some of them turn out to have a kernel of truth. I hadn't heard this one before -- and I can't say that I can agree with it. Genes "segregate independently", as Mendel pointed out more than 100 years ago. The disease gene and the protective gene are usually on completely different chromosomes. So as they travel through a family, they have no way of staying together.
There is another sense, however, where the tale is partly true -- a gene spelling that may convey a risk of diabetes in our calorie-rich Western environment may actually confer an advantage in a different envirnoment where carbohydrates are in short supply. So called "thrifty genes" may underlie the major contributions to diabetes, hypertension, and obesity in Western civilizations.

Washington, DC: How do I know that the drugs I am now taking for psychiatric disorders are still relevant for the new millennium or if I need to change the current prescription?

Abigail Trafford: Will we see genomics-based drugs for psychiatric disorders any time soon? How will they be different from the current generation of drugs?

Dr. Francis Collins: Drug therapy for psychiatric disorders will likely see major changes in the next 20 - 30 years, as a consequence of the advances in understanding molecular causes, which will come out of the Human Genome Project. But the introduction of new drugs takes a long time -- first the molecular hypothesis, then the tests in the laboratory, then clinical trials -- and so this will not happen overnight. The best ways to keep up with this are through newsletters from organizations like the National Association for the Mentally Ill (NAMI), the web site of the National Institute for Mental Health (part of NIH), and your own care provider.

Germantown MD: The benefits and breakthroughs resulting from Human Genome research are endless and would revolutionize the field of medicine and probably many other fields. The optimist in me says Genomics would affect society in a much bigger way than computers and the internet already has. Aside from helping finding cures (not to downplay the importance of this) what other key benefits do you see resulting from your research in the near-term, say 5-10 years from now?

Dr. Francis Collins: A major benefit will be to learn more about how we are all related to each other. The difference between my DNA sequence and yours is only 1 letter out of every 1000 in the code. It appears that we are all descended from a common set of about 2000 ancestors that lived about 40,000 years go. Studying the human genome will add great richness to these conclusions. And we will be forced to recognize that our current definitions of race and ethnicity are scientifically unjustifiable -- these are social and cultural concepts. There are no real boundaries. I am hopeful that this realization will contribute positively to a resolution of old and destructive battles fought on racial grounds -- grounds that have no scientific foundation.

Washington, DC: Dr. Collins,

Have you ever seen the movie "Gattaca"? It was a bit silly, I admit, but its basic premise was rather interesting. The film is set in the future, when parents are creating "designer babies," basically eliminating any disease risk factors, choosing eye and hair color, to produce genetically "ideal" offspring. These advances set the stage for discrimination against those with "inferior genes." What are your thoughts on this?

Dr. Francis Collins: Yes, I saw it -- three times! I even got to be the movie critic for GATTACA for the Today Show. It was thought-provoking, even scary -- but also based on premises that were obviously flawed. After all, the hero, who had not benefitted (?) from genetic interventions, seemed invincible and able to do anything, while the folks with perfect genes were smoking, drinking, committing murder, etc. The value of the movie, however, was in pointing out the potential of slipping into widespread uses of genetics for non-medical purposes. I think this is a serious issue. I don't think, however, that society would voluntarily give up their civil rights to worship at the altar of genetic determinism the way GATTACA portrayed!

Abigail Trafford: When you talk about "thrify genes", it seems that enviornment helps shape human genes. And then when the environment changes--we have plenty of food to eat, for example--these genes can lead to problems. Tell us about some specific genes that have both a protective and disease effect. Don't the genes for sickle cell anemia and Tay Sachs also have a protective effect?

Dr. Francis Collins: You're right. Being a carrier for sickle cell disease seems to provide protection against malaria. Being a carrier for cystic fibrosis may provide protection against cholera. Tay-Sachs carriers may be less likely to die from tuberculosis (though that's not at all certain). But if you get a DOUBLE dose of any of these, a terrible illness ensues (carriers have a single dose). With sickle cell disease, where the data is the strongest, it is absolutely clear that the sickle mutation has reached such a high frequency BECAUSE it is protective in West Africa and other places where malaria is a major killer.

Washington, DC: I don't know if this really falls under your
field, but I took a course in Animal Behavior in which I learned that animals give preferential treatment to their siblings -with the closest DNA match in the family- over other animals and family members. I always wondered if this behavior would occur between animals who were cloned. What do you think?

Dr. Francis Collins: An interesting question, but I don't really have any data to report. The Human Genome Project is not involved in cloning efforts. Personally I think we shouldn't clone humans, and I hope we never do. Of course identical twins are a natural experiment of this sort -- and I would guess their special kinship might well lead to some "preferential treatment" of identical twins for each other over other siblings. But that's hard to sort out between heredity and environment!

Washington, DC: I know human genes are VERY similar from one person to the next, but could you tell us who the Genome Project is gathering its genetic info from?

Dr. Francis Collins: For the sequencing part of the project, where the intention is to focus on the 99.9% that we all have in common, we are working with DNA from a small number of volunteers -- we don't know their identity, the identifiers were intentionally stripped off before the DNA was prepared, in order to protect them. Another part of the project is intentionally looking at human variation, that 0.1% where we are different from each other. For this purpose, we collected about 100 samples from individuals who trace their origins to Asia, 100 from Africa, 100 from Europe, and 100 from the Americas before colonization -- those samples are being used worldwide to search for DNA variation. This should be a good representative sample for surveying the variability of our species.

Abigail Trafford: Will it be possible to identify the genes for desirable qualities--height, beauty (whatever that is!), intelligence, musical or artistic ability? And then design interventions to enhance these qualities?
It's not ethical to use genetic research for nonmedical purposes, but you know someone is going to do it--just the way there are surgeons who do operations for cosmetic purposes.
So is it possible to design genetic "enhancements?" What kinds of ethical guidelines are needed to make sure we don't slip into trying to create a "designer race?"

Dr. Francis Collins: The traits you mention probably all have some hereditary contribution, but are also profoundly influenced by education, upbringing, and -- oh yes -- the choices of the person (free will is not about to go out of style). Over the course of the next 30 - 40 years we will likely learn the molecular basis of the hereditary components of some of these, and there will no doubt be a temptation to use this to "enhance" human characteristics. I personally believe that if this involved changing the human germline (the part of the DNA that is passed on to future generations) we shouldn't do this -- the ethical and safety risks are too great. But if that's not the case, if instead we develop a gene therapy or a drug therapy which improves someone's memory, or musical ability, should we do that? We need to engage in a vigorous societal debate about such situations BEFORE they become common place. A major concern is that access to such therapies would need to be uniform -- and traditionally that has NOT been the case. If genetic interventions are just another way to increase the distance between the haves and the havenots, we have done something very unfortunate.

Tysons: Dr. Dean O'Dell, radio and tv doc, said on his program recently that drugs would soon be available to effectively control bodyweight-metabolism, have you heard anything on this front---pop-a-pill and no more pot-bellies?

Abigail Trafford: This is the dream: a magic pill for bodyweight metabolism. Do you know the genes involved in metabolism and obesity? Are researchers trying to design drugs based on the genes they think are involved?

Dr. Francis Collins: Genes for obesity are being actively sought in humans, and have already been found in some experimental animals. But it will not be trivial to use that information to create the vision that Dr. O'Dell describes. For now, better keep going to the gym!

Abigail Trafford: Why has gene therapy been so disappointing? What is the message to the public from the deaths that have occurred in gene therapy experiments?

Dr. Francis Collins: Initial expectations about gene therapy will probably inappropriately optimistic. This is still a new field -- it hasn't been ten years yet since the first clinical trial in humans. The challenge of coming up with a delivery system that is efficient and safe has been harder than early researchers had hoped. Now, we have even seen that vectors, based on viruses, that were thought to be entirely safe are not so -- with Jesse Gelsinger's death the field of gene therapy lost its innocence forever. And yet, clinical research has always been fraught with unexpected outcomes. The only way you achieve breakthroughs is to take risks. And gene therapy still holds tremendous promise. We need to recognize, however, that many more years of research will be needed for that promise to be realized.

Abigail Trafford: Dr. Collins. All this gene science is very exciting. But what are the chances of a backlash against genetics? There's a lot of fear that science is getting out of hand--cloning animals, genetically manipulating food. Call it the Frankenstein Syndrome. Are you concerned about this?

Dr. Francis Collins: I'm very concerned. The current situation with genetically modified foods is sobering. Advances in technology, especially biotechnology, have a propensity to stir deep fears of mad scientists and Frankenstein syndromes. (Some have called the DNA double helix the Double-Edged Helix.) And yet this research carries with it the best hope that we have had for curing awful diseases -- the most unethical stance for a sensible person to take is that we should try to squelch this research altogether. Knowledge is neither good nor evil -- it's the uses we put it to that determines whether the revolution in human genetics, which is getting underway right now in a big way, will be seen by the public as a godsend or a curse. That means it is up to all of us, not just the scientists, to engage in a meaningful decision-making process about the limits of applications of this new area of science. Today's web conversation is a small part of that, thanks to all who have participated.

Abigail Trafford: Thank you Dr. Collins. We've just touched the surface of the promise and perils of genetics. Let's do this again! Meanwhile the discussion doesn't end here. You can continue to put your comments on the online message board. See you all next week, same time, same place.

© Copyright 1999 The Washington Post Company

  Our Regular Hosts:
Carolyn Hax: No-nonsense advice for the angst-ridden under-30 crowd.

Tony Kornheiser & Michael Wilbon:
These sports experts hold nothing back.

Bob Levey: Talk to newsmakers and reporters.

The complete
Live Online host list

Home   |   Register               Web Search: by Google
channel navigation