The Human Genome Diversity Project
The Human Genome Diversity Project (HGDP) was launched in the early 1990’s to explore genetic diversity in Indigenous populations worldwide. The original goal was to include 500 groups or tribes worldwide by collecting blood that contained cells and DNA, and then to use laboratory techniques to “immortalize” the cells by creating cell lines. Once cell lines were established, scientists could continue to grow cells and take a small amount to extract DNA for genetic analysis. The HGDP was going to be a huge undertaking and scientists wanted to make all of the data public so that other scientists could conduct research studies on the same DNA samples or on the data that came out of the research.
Scientists involved in the HGDP stressed urgency to collect samples before these populations “vanished” or became “extinct.” The HGDP goals were to collect DNA samples from as many Indigenous groups around the world in attempts to survey the genetic diversity in these groups “before they disappear” (Harry 1995). However, Indigenous people worldwide could see no clear benefit of participation, so suspicion about the project arose. The Indigenous Peoples’ Council on Biocolonialism (IPCB), an activist group founded in opposition to the HGDP, issued several statements on the “negative effects of biotechnology” and a publication on “model resolutions opposing the Human Genome Diversity Project” and also a model ordinance for tribal governments entitled “Scientific Research Review and Supervision” (Harry 2009). The Nevada-based IPCB was organized to “assist Indigenous peoples in the protection of their genetic resources, indigenous knowledge, cultural and human rights from the negative effects of biotechnology” (Harry 2009). The IPCB drafted a model Academic Research Agreement for tribes to modify as they see fit. This model agreement is intended to help tribes regulate the types of research conducted in their communities. The IPCB also issued statements urging tribes and Indigenous peoples to “raise international awareness of [the HGDP’s] efforts and develop support among all people to prevent the further violation and assault of their human rights” and “to protect the integrity of life” (Harry 1995). The IPCB advocated that tribes should be free to “reject the taking of their genetic material by such projects” (Harry 1995).
At the same time, the North American Committee of the HGDP developed a Model Ethical Protocol for collecting DNA samples, and that introduced the concept of group informed consent as a means to ensure that all research participants agree to participate as individuals and as members of a tribe. The Model Ethical Protocol also created solutions for gene patenting in order to address some of the concerns of Indigenous groups (Greely 1999).
Despite the efforts by the North American Committee of the HGDP, Indigenous people felt there were too many unaddressed ethical issues. North American groups remained strongly opposed to the HGDP calling it the “Vampire Project” as they felt scientists would drop in, collect blood samples, and disappear without returning to share the results. The IPCB and other groups called for a halt to the project, leading some tribes to impose a moratorium on all genetic research studies (Harry 1995; Greely 1998; Greely 1999; M'Charek 2005; Reardon 2005).
- If you were asked to participate in the HGDP or another similar project, what questions would you raise for the project organizers?
- How would you communicate your views to scientists? Who would write letters to scientists? What would the letters say? Would you organize in-person meetings with scientists?
- How would you communicate your views to the rest of your community? Who would organize tribal council/chapter meetings with the community? Who would organize tribal council/chapter meetings with scientists?
- What would your tribe gain/lose from participation in such a research study? How much effort and resources would you need to dedicate to participation?
- What would your tribe gain/lose if you did not participate?