Indigenous Self-Determination in an Age of Genetic Patenting: Recognizing an Emerging Human Rights Norm
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INDIGENOUS SELF-DETERMINATION IN AN AGE OF
GENETIC PATENTING: RECOGNIZING AN
EMERGING HUMAN RIGHTS NORM
Kara H. Ching
INTRODUCTION
Genes and the information they contain are fundamental building
blocks of a people's identity. Genetic research on groups of people
occasionally results in lucrative biotechnology patents. For example,
approximately half of the inhabitants of the South Atlantic island of
Tristan da Cunha suffer from asthma.' Researchers from the San Di-
ego biotechnology firm Sequana Therapeutics collected genetic mate-
rial from this group and located a genetic mutation.' The German
company Boehringer Ingelheim funded the research and bought this
ground-breaking information for $70 million.3 From this information,
Boehringer Ingelheim plans to develop a treatment to effectively alle-
viate asthma symptoms.4 Researchers have recently targeted indige-
nous peoples5 for genetic study because their heightened isolation
1. See Asthma-Related Gene Found in Study on Small Island, Firm Says, LA.
Tunes, May 21, 1997, at A18 [hereinafter Asthma-Related Gene]. The inhabitants of
this island are not indigenous, but the example is meant to illustrate that genetic re-
search involving relatively isolated groups can prove to be lucrative.
2. Id.
3. Id.; see Paul Salopek, Genes Offer Sampling of Hope and Fear, Chi. Trib., Apr.
28, 1997, at 8.
4. Asthma-Related Gene, supra note 1.
5. Defining indigenous groups is difficult. See Russel Lawrence Barsh, Indige-
nous Peoples and the UN Conunission on Human Rights: A Case of the Immovable
Object and the Irresistible Force, 18 Hum. Rts. Q. 782, 791-94 (1996). The following is
one definition from the U.N. Sub-Commission on Prevention of Discrimination and
Protection of Minorities:
Indigenous communities, peoples and nations are those which, having a his-
torical continuity with pre-invasion and pre-colonial societies that developed
on their territories, consider themselves distinct from other sectors of the
societies now prevailing in those territories, or parts of them. They form at
present non-dominant sectors of society and are determined to preserve, de-
velop and transmit to future generations their ancestral territories, and their
ethnic identity, as the basis of their continued existence as peoples, in ac-
cordance with their own cultural patterns, social institutions and legal
systems.
Special Rapporteur Josd R. Martinez Cobo, Study of the Problem of Discrimination
Against Indigenous Populations, at 29, U.N. Doc. E/CN.4/Sub.21986f7IAdd.4, U.N.
Sales No. E.86.XIV.3 (1987); see also, Julian Burger, Gaia Atlas of First Peoples 20
(1990) (Although indigenous people vary widely in their customs, culture, and im-
pact on the land, all consider the Earth a Parent and revere it accordingly. 'Mother
Earth' is the center of the universe, the core of their culture, the origin of their iden-
tity as a people.); Jose P. Kastrup, The Internationalization of Indigenous Rights from](ViewImageLocal?handle=hein.journals/flr66&div=31&collection=&method=preview&ext=.png&size=3)
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Indigenous Self-Determination in an Age of Genetic Patenting: Recognizing an Emerging Human Rights Norm
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