ELSI

ELSI stands for Ethical, Legal and Social Issues. The term is associated with the Human genome project. The project's goals included not only identifying all of the approximately 24.000 genes in the human genome, but also to address the ethical, legal, and social issues which might arise from the availability of genetic information.

5% of the US annual Human Genome Project (HGP) budget was allocated to address the ELSI arising from the project.

The failure of ELSI to help impacted groups

Debra Harry, Executive Director of the U.S group Indigenous Peoples Council on Biocolonialism (IPCB), explained that despite a decade of ELSI funding, the burden of genetics education has fallen on the tribes themselves to understand the motives of Human genome project and its potential impacts on their lives.

Meanwhile, the government has been busily funding projects studying indigenous groups without any meaningful consultation with the groups. (See Biopiracy)

The main criticism of ELSI is the failure to address the conditions raised by population-based research, especially with regard to unique processes for group decision-making and cultural worldviews. Genetic variation research such as HGP is group population research, but most ethical guidelines, as Harry mentions, are not euipped to address group rights. She is making such claim because those research represents a clash of culture: indigenous people's life revolves around collectivity and group decision making whereas the Western culture promotes individuality.

Harry suggests that one of the challenges of ethical research is to include respect for collective review and decision making, while also upholding the traditional model of individual rights.

References

Ms. Harry's comments in the International Forum on Globalization Teach-in held in New York City in February 2001 were based on her recent article, "Biopiracy and Globalization: Indigenous Peoples Face a New Wave of Colonialism", published in the magazine Splice, January/April 2001 Volume 7 Issues 2 & 3 ( [http://www.geneticsforum.org.uk] )