Ethical, Legal and Social Issues
The project's goals included not only identifying all of the approximately 20,000-25,000 genes in the human genome, but also to address the ethical, legal, and social issues (ELSI) that might arise from the availability of genetic information. Five percent of the annual budget was allocated to address the ELSI arising from the project.
Debra Harry, Executive Director of the U.S group Indigenous Peoples Council on Biocolonialism (IPCB), says 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, according to Harry, focus on individual rights instead of group rights. She says the 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 Western model of individual rights.
Read more about this topic: Human Genome Project
Famous quotes containing the words legal, social and/or issues:
“The disfranchisement of a single legal elector by fraud or intimidation is a crime too grave to be regarded lightly.”
—Benjamin Harrison (1833–1901)
“Throughout the 1980’s, we did hear too much about individual gain and the ethos of selfishness and greed. We did not hear enough about how to be a good member of a community, to define the common good and to repair the social contract. And we also found that while prosperity does not trickle down from the most powerful to the rest of us, all too often indifference and even intolerance do.”
—Hillary Rodham Clinton (b. 1947)
“Your toddler will be “good” if he feels like doing what you happen to want him to do and does not happen to feel like doing anything you would dislike. With a little cleverness you can organize life as a whole, and issues in particular, so that you both want the same thing most of the time.”
—Penelope Leach (20th century)