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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
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
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
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
Research at the University of Copenhagen with
H. M. Kalckar
1956-58 1958-61 1961-76 1968 1988-89 1989.
The John Collins Warren Prize of the Massachusetts General
Hospital (with F.H.C. Crick), 1959
M.H.F. Wilkins), 1962
D.Sc., University of Chicago, 1961
eis University, 1973
American Society of Biological Chemists
A nerican Academy of Arts and Sciences (1958)
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. 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.
Senator HARKIN. The mapping.
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.
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:)