Indian
Perspectives on Genetic Variation Research
The National Institutes of Health is collecting
blood samples from people whose ancestors came from different parts
of the world. About 100-200 people from each of about 10 ethnic or
geographic groups will give samples for this project. Over the next
three years, researchers will study the samples to find places in
the DNA where people vary. Researchers will use the genetic
variation information in the database to create a genetic map that
summarizes the patterns of genetic variation, haplotype map or “HapMap.”
For each sample, this will include information on hundreds of
thousands
 (eventually millions) of genetic variations, as well as
the ethnic or geographic group and the sex of the person who gave
the sample. For a disease, such as diabetes, researchers will study
the haplotypes in a group of people who have the disease, and in
another group of people who do not. Areas in the DNA where the two
groups differ in their haplotypes will be clues that those areas
might contain genes that affect the disease. The adult Indian
community in Houston will be one of the ten ethnic groups.
This project will engage members of Indian
communities in the Houston metropolitan area to elicit their
perspectives on genetic research and the International HapMap
Project. The project will involve: 1) interviews with community
leaders; 2) focus groups with community members; 3) working groups
to develop culturally appropriate educational materials,
research-recruitment strategies, and informed-consent instruments;
4) creation of a community advisory board; 5) collection of blood
samples for use in the International HapMap Project and other
studies of human genetic variation; and 6) follow-up after sample
collection. Adult members of Indian communities in the Houston area
will participate in these community consultations. This is an ideal
setting in which to explore these issues since the Houston
metropolitan area has a large immigrant population from India and
several well established Indian-American communities. Following
ethnographic investigations of community perspectives, researchers
will recruit 130 unrelated individuals to donate blood samples for
the purpose of studying human genetic variation and creating a human
haplotype map.
Specific Aims of the project are to : A) engage
community members in discussions about: 1) human genetic variation
research and the construction of an international haplotype map; 2)
social meanings attached to racial and ethnic identities; and 3) the
potential for genetic variation research and haplotype mapping to
affect how members of the community interpret those racial and
ethnic identities. B) Define culturally-mediated ways of
understanding and evaluating potential benefits and harms of genetic
variation research, and haplotype mapping in particular, among
members of Indian-American communities.
This study was initiated when researchers at
Baylor College of Medicine were approached by organizers of the
International HapMap Project to provide assistance in the collection
of biological materials from South Asia (materials describing the
HapMap project appear in the Appendix). After considerable debate,
the HapMap Population Working Group has identified 13 initial
populations to be sampled as part of the project: 1) Yoruban
(Nigerian), 2) Japanese, 3) Chinese (Han), 4) Western and Northern
European, 5) Kenyan, 6) South African, 7) African-American, 8)
Italian, 9) Mexican-American, 10) Finnish, 11) Moroccan, 12)
Indian-American (South Asia), and 13) Chinese-American (Han).
Given the tremendous ethnic diversity that
exists in India and other parts of South Asia, limiting sample
collection to one specific region of India for the initial HapMap
studies is important for establishing a robust foundation to which
additional studies may be added in the future. For the purpose of
constructing the International HapMap, a sample of unrelated
Gujarati-speaking individuals (Gujaratis) representative of a range
of castes and religions from geographically distinct regions within
the state of Gujarat will be sampled. The state of Gujarat, with a
population of approximately 50 million people, is located on the
west coast of India. Among Indian-Americans, Gujaratis constitute
the largest Indian ethnic group residing in the United States,
comprising roughly 60% of the 1.2 million individuals of Indian
origin currently living in the U.S.
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