© 1997 Nature Publishing Group http://www.nature.com/naturegenetics
correspon1'-zce
embryonic development originates in part
through endogenous biosynthesis in the
neuroepithelium and in part through
exogenous, maternal- or yolk sac-derived
cholesterol transported on lipoproteins.
The papers describing hedgehog process-
ing and function
1
·
4
provide a possible mol-
1. Chiang, C. et al. Nature 383, 407-413 (1996).
2. Porter, J.A., Young, K.E. & Beachy, P.A. Science 274,
25S-259 (1996).
3. Belloni, E. et al. Nature Genet. 14, 353-356 (1996).
4. Roessler, E. et al. Nature Genet. 14, 357-360 (1996).
ecular mechanism by which impaired
maternal-fetal cholesterol transport could
affect the development of the central ner-
vous system.
Joachim Herz1. Thomas E. Willnow
2
&
Robert V. Farese, Jr
3
5. Salen, G. et al . 1. li pid Res. 37, 116~ 1180 (1996).
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7. Farese, R. V. Jr, Ruland, S. L., Flynn, L. M., Stokowski, R.
P. & Young, S.G. Proc. Natl . Acad. Sci. USA 92,
1
Department of Molecular Genetics, University
of Texas Southwestern Medical Center, Dallas,
Texas 75235, USA.
2
Max-Delbruck-Center, Franz-
Gross-Haus 1340, Wiltbergstr. 50, 13125 Berlin-
Buch, Germany.
3
Gladstone Institute of
Cardiovascular Disease and Department of
Medicine, University of California, San Francisco,
California 94141, USA.
1774-1778 (1995).
8. Huang, L.-S. etal. J. Clin. Invest. 96, 2152-2161 (1995).
9. Willnow, T.E. et al. Proc. Natl. Acad. Sci . USA 93
846<H1464 (1996).
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International collaboration in
genetics research
Sir - With reference to the letter by V.L.
Nimgaonkar (June 1996, page 142)
1
, we
note that though it is undesirable to
"impose cumbersome rules by an inflexi-
ble bureaucracy'; the rights of subjects who
have donated their genetic material and the
populations they represent must be pro-
tected. Several instances of exploitation
2
•
3
and a "scramble" to collect DNA samples
before the country (India) 'tightens its laws'
have indicated that scientists in India have
been approached by scientists abroad to
send blood samples from indigenous pop-
ulations or patients with rare medical dis-
orders. Illegal or unauthorised transfer of
DNA from ethnic groups and patients has
also been reported in the Indian lay press
4
•
These allegations cannot be dismissed eas-
ily as ' until now the exchange of samples
has been made on more pragmatic-and
less formal grounds, involving for example
either token 'gifts' in return or medical sup-
plies and treatment'
5
. Countries with large,
well studied populations may turn out to
be 'genetic goldmines.... [but] ethical and
economic problems [ will be] an
inescapable feature of genetic research'
6
•
The statement issued by UNESCO after
the South-North Genome Conf erence
not es that the ethnic diversity of India pro-
vides an opportunity to gain insights into
human genetics but emphasizes protection
of the interests of developillg nations and
their populations. It is, therefore, appro-
priate that the national government should
monitor, and if necessary, proscribe certain
kinds of usage or traffic. The procedures
for international sharing of genetic mater-
ial are not onerous, hence we are extreme-
ly critical of those who would choose to
'bypass the regulatory bodies entirely'
1
• Sci-
entific, consumer and public groups have
124
been pressing for more stringent safeguards
and there is an urgent need to make timely
decisions regarding this matter.
Rather than simply export DNA or cell
lines, a more fruitful approach would be to
set up modern facilities in the host coun-
try and allow exchange of DNA with other
countries for standardization of techniques
and comparison. The large scientific com-
munity, including geneticists, competent
medical practitioners and a network of hos-
pitals and health centers make this a work-
able proposition in India. Source material
could be managed at central laboratories,
and if desired, be made available to inter-
national collaborators with due protection.
Many international collaborations have
been equitable, but others have not -nor
have they been respectful of the interests of
the source population
3
•
5
•
7
•
As a team of scientists, we are engaged in
an effort to set up a multi-centre genetic
study of psychiatric disorders in India with
American collaboration, and with respect to
institutional safeguards, we feel the concern
ofNimgaonkar - that such a process may
"hinder equitable collaboration" - is mis-
placed. The intent of this initiative is to set
up a state-of-the-art laboratory for genetic
research in India with technical input from
collaborators in the United States in linking
multiple sites in India through an electron-
ic network. All blood samples will remain in
India and analysed here. For cross-labora-
tory comparisons alone, samples will be
exchanged in both directions with proper
documentation. The intellectual property
rights will be protected with a majori ty share
of the patent, if any, being held by the col-
laborating Indian sites and 20% of the ben-
efits accruing from such a pa tent being used
by individual institutions to develop better
services for the population that provided the
genetic material. We hope that this will serve
as an important centre for manpower devel-
opment in the field and as a model for othe1
disorders in India. In the light of previou:
problems, proposals need to be careful!)
screened and monitored and explicit guide-
lines developed for international collabora·
tive research. The Government oflndia anc
its respective agencies are already engaged
in this exercise. This will strengthen tht
process of timely approval of such collabo-
rative ventures.
Somnath Chatterji1, Sanjeev Jain 1,
Samir K. Brahmachari
2
,
Partha Majumder
3
& Theodore Reich
4
1
Department of Psychiatry, National Institute of
Mental Health and NeuroSciences (NIMHANS),
Bangalore - 560029, India.
2
Molecular Biophysics
Unit, Indian Institute of Science, Bangalore,
India.
3
Division of Anthropometrics and Human
Genetics, Indian Stat istical Institute , Calcutta,
India.
4
Department of Psychiatry and Genetics,
Washington University School of Medicine, St.
Louis, Missouri, USA.
1. Nimgaonkar, V.L. Nature Genet. 13, 142 (1996).
2. Editorial. Nature Genet. 12, 33~340 (1996).
3. Jayaraman, K.S. Nature 381, 13 (1996).
4. The Economic Times, Bangalore, India, 12 February
1996.
5. Dickson, D. Nature381, 11- 14(1996).
6. Cohen,B.Nature 381, 12(1996).
7. Mukerjee, M. Scient ific Am. 274, 4, 22- 26 (1 996).
PAX6 missense mutation in isolated
foveal hypoplasia
Na ture Genetics 13, 141-142 (1 996).
In the July issue, the numbering for the
arginine-to-cysteine mutation (Rl 25C)
stated in the text is incorr ect, and should
read Rl 28C. The numbering of other
variants is not affected, however.
nature genetics volume 15 february 1997