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 steps toward the emancipation of women are first intellectual, then industrial, lastly legal and political. Great strides in the first two of these stages already have been made of millions of women who do not yet perceive that it is surely carrying them towards the last.”
—Ellen Battelle Dietrick, U.S. suffragist. As quoted in History of Woman Suffrage, vol. 4, ch. 13, by Susan B. Anthony and Ida Husted Harper (1902)
“... spinsterhood [is considered to be] an abnormality of small proportions and small consequence, something like an extra finger or two on the body, presumably of temporary duration, and never of any social significance.”
—Mary Putnam Jacobi (1842–1906)
“To make life more bearable and pleasant for everybody, choose the issues that are significant enough to fight over, and ignore or use distraction for those you can let slide that day. Picking your battles will eliminate a number of conflicts, and yet will still leave you feeling in control.”
—Lawrence Balter (20th century)