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In the past year, NCHGR also broke new ground in supporting the study of

the ethical and social impacü of new information about the human genome as it

is translated into practical and clinical use.

With approximately 4 to 5

percent of the NCHGR budget devoted to these studies in FY 1992, NCHGR has

pioneered a new NIH participation in studies of the potential conflicts

between the development of new medical technologies, personal freedoms, and

social policy.

Activities of the NCHGR Ethical, Legal, and Social Implica

tions Program will be the point of entry through which the public voice on

these issues will be heard.

Public participation will be the best assurance

that the benefits of genetic knowledge stemming from genome research will be

maximized and the potential harms minimized.

This past year the NCHGR ELSI program and its joint NIH-DOE working group

have identified three major issues as priority research areas: privacy of

genetic information in the context of insurance and employment as well as

among members of extended families with inherited disease; safety and efficacy

issues related to the clinical use of genetic tests; and the fair use of

genetic information to avoid discrimination by insurance providers and

employers.

A task force assigned specifically to the issues related to insurance has

begun a dialogue with representatives from the private health insurance

industry and over the next year will convene public meetings and produce

policy options on this complex matter.

It is our hope that the knowledge and

resources generated by this process will develop a body of thoughtful infor

mation useful to lawmakers should these issues require legislative action.

Last year, soon after the gene for the common genetic disease cystic

fibrosis was discovered--and a clinical test to detect the gene was developed.,

-NCHGR co-sponsored a workshop on the appropriate use of the test to detect CF

gene carriers.

Workshop participants recognized that the testing issues

evolving around the CF gene discovery are important not only with respect to

CF itself but will also be relevant to a multitude of other diseases as their

corresponding genes are discovered.

Indeed, news stories about gene

discoveries now appear regularly.

NCHGR will be funding studies on how best

to integrate evolving genetic tests into medical care.

NCHGR is committed to increasing the number of students and faculty at

minority institutions who will participate in the Human Genome Project. This

past year, NCHGR staff has met with members of the Association of Minority

Health Professional Schools and researchers supported by NIH's Research

Centers in Minority Institutions program to discuss how minority institutions

can become involved.

Several groups have presented interesting ideas to us

and we expect to receive applications in the near future.

In addition, NCHGR

has established a program to

provide funds to faculty and students at

minority institutions for travel to genome-related scientific meetings,

courses, and workshops.

Mr. Chairman, I believe NCHGR has made enormous strides in its first year

to establish the administrative and scientific mechanisms needed to put the

Human Genome Project on the sound footing capable of supporting this

significant scientific research program.

I have every confidence that this

program will make important contributions to our knowledge about human

biology, in particular toward the understanding of the thousands of human

diseases that have their origins in faulty genes.

The fiscal year 1992 budget request for the National Center for Human

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1950-51

1951-52

1953-55

1955. 56

Research at the University of Copenhagen with

H. M. Kalckar
Research at Cambridge University in the Cavendish

Laboratory
Senior Research Fellow in Biology, California Institute of

Technology
Research at Cambridge University in the Cavendish

Laboratory
Assistant Professor of Biology, Harvard University
Associate Professor of Biology, Harvard University
Professor of Biology, Harvard University
Director of the Cold Spring Harbor Laboratory
Associate Director for Human Genome Research, NIH
Director, National Center for Human Genome Research, NIH

1956-58 1958-61 1961-76 1968 1988-89 1989.

Awards :

The John Collins Warren Prize of the Massachusetts General

Hospital (with F.H.C. Crick), 1959
Eli Lilly Award in Biochemistry, 1960
Albert Lasker Prize (awarded by the American Public Health

Association), 1960
Research Corporation Prize (with F.H.C. Crick). 1962
Nobel Prize in Medicine (with F.H.C. Crick and

M.H.F. Wilkins), 1962
John J. Carty Gold Medal of the National Academy of

Sciences, 1971
The Presidential Medal of Freedom, 1977

Honorary Degrees:

D.Sc., University of Chicago, 1961
D.Sc., Indiana University, 1963
L.L.D., Notre Dame University, 1965
D.Sc., Long Island University (C.W.Post), 1970
D.Sc., Adelphi University, 1972
D.Sc.,

ra

eis University, 1973
D.Sc., Albert Einstein College of Medicine, 1974
D.Sc., Hofstra University, 1976
D.Sc., Harvard University, 1978
D.Sc., Rockefeller University, 1980
D.Sc., Clarkson College, 1981
D.Sc., State Univ. of New York, Farmingdale 1983
M.D., Buenos Aires, Argentina, 1986
D.Sc., Rutgers University, 1988

Professional Affiliations:

American Society of Biological Chemists
American Association for Cancer Research

Honorary Affiliations:

A nerican Academy of Arts and Sciences (1958)
National Academy of Sciences (1962)
Danish Academy of Arts and Sciences (1963)
Honorary Fellow, Clare College, Cambridge University (1968)
American Philosophical Society (1977)
Atheneum (London) (1980)
Royal Society (London) (1981)
Academy of Sciences (USSR) (1989)

MAPPING TIMEFRAME

Senator HARKIN. There is another vote. I will have to see if I can hurry through this.

We are talking about 15 years as sort of the plan to map and sequence?

Dr. WATSON. Yes.

Senator HARKIN. I asked you this last well, was it last year or the year before.

Dr. WATSON. Last year you asked me.
Senator HARKIN. Can we collapse that timeframe some?
Dr. WATSON. I don't think so.

Senator HARKIN. Again, I want to know why not because you are talking about personnel and you are talking about computers. You are talking about machines.

Dr. Watson. We are going to get the maps. Depending on exactly how much money we get, we could collapse the mapping timeframe slightly, but we will get it done in 5 years.

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Senator HARKIN. The mapping.
Dr. WATSON. We can get the maps.
Senator HARKIN. In 5 years.

Dr. WATSON. In 5 years. And that is what a lot of people want. The map will be needed to get the gene for early onset breast cancer. There is one gene out there which a lot of people are trying to get.

Senator HARKIN. So, you can get the maps done in 5 years.

Dr. WATSON. Yes; then it is the sequencing, and that is a question of the rate at which we will do it. We really do not want to do it if we are going to bankrupt the rest of biomedical research. So, we want to reduce the costs down.

Senator HARKIN. No, no; I don't want to bankrupt the other one either, and perhaps that is why we are having this little impasse here.

What I am asking you is a specific question. Assuming that more money was put into this program specifically, not taken out of any other program, but just more money was put into this program from a nonbiomedical research account, let's say, some other account of government, could you sequence the genome in a much shorter period of time than 10 years?

Dr. WATSON. I can't really give you an answer for 5 years. Five years from now I might be able to say we do not need another 10 years. We could do it in 7 years. But I think we will need the total 15 years. Right now the number of people is limited, in part, because they never had the money to do this research.

Senator HARKIN. OK, I ask you if you had more money, could you reduce the time for the mapping?

Dr. WATSON. By a couple of years, but not more than that because getting the right person, having the confidence that he can do it is a time-consuming process. We have to train these people. We have to get them into it. The best I would like to offer you is 3 years for mapping. I do not like to be a pessimist, but I just know that we have a lot of very good people, the very best, who are going to try mapping. And I am confident they will do it in 5 years.

Senator HARKIN. Then the sequencing. As I understand it—and again, here is where I lack scientific knowledge, but from my limited understanding of this, it is my belief that if you had more personnel, obviously qualified personnel,

had the supercomputers that it's going to take, that these 3 billion pairs could be sequenced in a lot shorter period of time than 10 years.

Dr. WATSON. If we have the right people. I keep going back to the people. We have some good ones. I would love to have twice as many that I could name to you, and if I can name them to you, I will come back to you right away and say they need more money. But I think right now in the President's budget—and I am speaking very honestly-we have about the right amount for next year. But if we have an enormous breakthrough—and we're trying to get breakthroughs—the moment we have a breakthrough, I will be to you very fast. (Laughter.]

Senator HARKIN. Well, I would appreciate that because I think there is more support for this than you may think. But again, we do not want to put money into something that is just impossible.

and you

Dr. WATSON. I have a close friend of mine who is a Nobel Prize winner who says it will done by 1998.

Senator HARKIN. Well, I guess that is what I'm picking up. I am hearing that it can be done sooner than that.

Dr. Watson. But honestly, I don't believe him. [Laughter.]

He is more intelligent than I, but I don't believe him. But I'm just trying to put it this way.

Senator HARKIN. All right.

Dr. RAUB. Our Nobel Prize winner says it will take longer. (Laughter.)

Senator HARKIN. Well, at some point I want to discuss this more in depth. I would really like to get a better understanding.

Dr. Watson. I would be most pleased to meet with you and your staff and go over this in great detail.

Senator HARKIN. I would like to do that at some point perhaps after I get through the appropriations process this year, maybe this summer. I just want to really get a good understanding of why this can't be shortened down. Dr. WATSON. I will be pleased to tell you.

QUESTIONS SUBMITTED BY THE SUBCOMMITTEE Senator HARKIN. Thank you. There will be some additional questions which will be submitted for your response in the record.

[The following questions were not asked at the hearing, but were submitted to the Center for response subsequent to the hearing:)

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