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January 22, 1973
STANFORD UNIVERSITY SCHOOL OF MEDICINE
Department of Genetics

Honorable Birch Bayh
United States Senate
Washington, D.C. 20510

Dear Senator Bayh,

I am pleased to note your interest in research on genetic disease
as indicated in your letter of January 11.

It would be a mistake to formulate a comprehensive attack on genetic
disease in the same context of a well defined mission that we think of
in relation to efforts like nuclear energy and the space program. Our
principal requirements for advances in genetics are basic new knowledge
although much more certainly could be done to develop the practical
utility of what we already know. However, we are going through a period
where it is becoming increasingly difficult to obtain broad base support
for basic research without encaPsulatingit in a definite targeted mission
and, pragmatically speaking, this may now be the only way that further
progress can be achieved.

 

I have been pleased to see a number of measures which have received
legislative support leading to special programs for diseases like
sickle cell anemia and Cooley's anemia. These are entirely laudable,
but they hardly represent the ideal approach to responding to a wide
ranging set of problems whose basic elements know no ethnic boundaries.
I would therefore strongly favor a reorganization of such programs so
that they would achieve a proper but well ordered place in a comprehensive
attack on genetic disease, along the lines of the testimony that I gave
to the House Appropriations Committee a couple of years ago. Their response was a
brilliant start and I believe the time may now be ripe to take some further
steps, the most dramatic of which might perhaps be the redesignation of
the National Institute of General Medical Sciences into the National
Institute of Genetics and Other Medical Sciences. This has the advantage
of ensuring that a particular institute has a well-defined mission in the
field of genetic disease; one may have to guard against the possible
hazard that other institutes ~- like Heart and Lung, Allergy, Metabolic
Disease, and others may slacken the important efforts they are also making
in genetic diseases that cut across their own categorical mission.

At the present time I would have to say that our most serious problem
is not in the table of organization of research efforts but in the overall
funding of health related research. This has reached crisis dimensions ~~
in the last few weeks with the announcements of intended severe cutbacks
in already authorized programs of the NIH and in particular with the
avowed expectation that research training grants, including those that

have played an important part in providing skilled professionals for

 

over

LT, J. P. KENNEDY, JR. LABORATORIES FOR MOLECULAR MEDICINE, DEDICATED TO RESEARCH IN MENTAL RETARDATION

MOLECULAR BIOLOGY HEREDITY NEUROBIOLOGY DEVELOPMENTAL MEDICINE
 

Honorable Birch Bayh -2- 1/22/73

_ genetic research are to be abolished / I have no hesitation in saying

that the withdrawal of this kind of support would be catastrophic for

this department of genetics which was founded here in 1959 explicitly
with this kind of financial help. The threatened withdrawal of the
training grant program will remove the only basis that we can now foresee
for the recruitment and support of graduate students and postdoctoral
fellows in genetics. It also provides a significant proportion of the
salary base for our faculty who, of course, have spent a significant part
of their time in these graduate educational activities, as well as in

the promulgation of modern genetic concepts to our medical students and
house-officers. In other times the problem might have been one of merely
shifting the nominal category of support from research training to research
production but I do not have to tell you the pressure that is also applied
against any hope of expansion in that direction. Cutbacks in support from
other agencies and for other research programs have already necessitated

a shrinkage in our research staff and we are in a desperate struggle to
prevent further erosion of a capability that has been built up painfully
and expensively over the years.

I would ‘then view recommendations for administrative reorganization
as having their most urgent role the cultivation of informed interest in
and debate about the merits of such general research support; I am prepared
to respond to any framework that would allow the survival of our programs
as a necessary precondition to new arrangements that might improve the
coordination of existing efforts and the establishment of realistic goals
for human betterment. I hope this candid statement of where our problem
really lies will encourage you to make even stronger efforts in spite of
the deterrence that you indicate you expect from the administration.

These remarks have possibly already answered some of your other
specific questions. The National Institute of Health is certainly the
appropriate agency for expanded research efforts in genetics. You inquire
about the possible effectiveness of "a grant program encouraging private
research" in contrast to “federal research". I assume that this postulates
the indespensability of federal financial support for there is simply no
way in which private philanthropy or profit-oriented free enterpise can
assume the necessary responsibility. It is, of course, important that we
maintain a pluralistic approach.and private foundations can certainly play
a role out of proportion to their meager financial capability, by finding
accidental or structural gaps in government-based programs. Free enterprise,
especially the drug industry, allows the market economy to play an important
role in resource allocation which is especially apt for product development
(contra basic research) of drugs and devices. For technical reasons these
play a secondary role in the area of genetic disease and we face a constant
moral difficulty in attempting to rely on the expectation of profit from
the need for life-saving intervention as the technique of guiding investment
in very long-range, deferred pay-off types of programs.

There are a few important efforts that would be a good match to the
special capabilities of "federal research" efforts like those that might
involve some of the national laboratories that were originally established
to meet needs in the field of atomic energy and space. The large-scale
screening of chemical environmental additives for genetic hazard and the
establishment of centers for the routine analysis of complex protein

structures would be examples of important and well-defined programs that

over
 

Honorable Birch Bayh -3- 1/22/73

might well utilize national laboratory capabilities. Another is the
development of sophisticated electronics for the mechanized diagnosis

of chromosome patterns. However, the larger part of research efforts

in this field, as in other health research fields, would be better
aportioned to the pluralistic genius of workers at academic institutions
throughout the country and in definite measure also at the NIH campus
itself in Bethesda.

You will hear vicious propaganda that we should stop producing
highly skilled manpower at Ph.D. level, because there is a shortage of
jobs for these people to occupy. We have had some difficulty in finding
ideal positions for some of our graduates but they have all been well
placed in highly productive situations. The job shortage is an artificial
one which results from the turnaround in federal policy with respect to
the support of research. To use this as the argument for continued cut-
backs in support of the combined research and training process is, of course,
to insist on the realization of a self-fulfilling prophecy. If the country
wants to have the benefit of continued advances in medical science it is
obligatory that there be a continued investment which still remains a very
small percentage of total "sales" in the health field that, for reasons
already explained, can only come from federal sources. If we were really
to go to a free enterprise economy to adjust manpower allocation in this
field you would have to contemplate changing our patent laws to permit
scientists to profit in full measure from their basic scientific discoveries
in the same fashion as inventors are rewarded for their ultimate practical
application. And you would also have to promise not to engage in re-
eriminations about holding up the sick and the dying for all that the traffic
could bear. I do not believe that any thoughful person would recommend such
a redirection of human policy.

Sincerely yours,

Joshua Lederberg
Professor of Genetics

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