Andrew Pollack, a New York Times journalist for “Business and science of biotechnology”, reports on proposed changes in the ruling of research with human subjects as an effort to protect them and facilitates new research.
[From the New York Times Website]
“The officials said the changes were needed to deal with a vastly altered research climate, whose new features include genomics studies using patients’ DNA samples, the use of the Internet and a growing reliance on studies that take place at many sites at once.
‘These are the first substantial changes that have been made to the rules governing human subjects in decades, so this is really quite a historic moment,’ Kathy Hudson, a deputy director of the National Institutes of Health, said in a telephone news conference on Friday.
The changes would be in the rules that cover topics like the informed consent that research participants must provide and the institutional review boards that oversee research at universities and hospitals. Initially drawn up by the Department of Health and Human Services in the 1970s and ’80s, the system was adopted by 14 other federal agencies and departments in 1991 and became known as the Common Rule.
But some experts said it had become too cumbersome.
‘It’s a terrible drag on getting good research done,’ said Dr. Robert J. Levine, a professor of medicine and a bioethicist at Yale who headed the university’s institutional review board for 31 years. He said Sunday that while he had not thoroughly reviewed the government’s lengthy proposal, he was encouraged by what he had seen.
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New Scientist (Issue 2817) features Linda Geddes’ article “Tribal wars: DNA testing divides American Indians”. Geddes reports on the membership disputes among the Chukchansi Tribe in Central California, USA. The Tribe Council will vote this month if new applicants must undergo a DNA test to prove they “really” are related to a member of the community. From the point of view of the tribal council this is an effort to block access to the benefits coming with the membership (e.g. the right to a share of the Chukchansi Gold Resort and Casino’s profits) and grant access only to those qualified (“blood quantum”). Tribe members, would-be members, and external observers fear this consumption of genetic information may open the door for false disputes around ancestry; contribute to delegitimizing other cultural criteria for establishing membership; and possibly, to undermine tribal sovereignty.
(2009). “Tribal wars. Genetic testing divides Native Americans”. New Scientist 210(2817): 8-10.The article can be accessed through the New Scientist webpage (through a subscription).
The meeting will take place at the UN Headquarters, in New York City. The provisional agenda is as follows:
1. Election of officers.
2. Adoption of the agenda and organization of work.
3. Follow-up to the recommendations of the Permanent Forum:
(a) Economic and social development;
(c) Free, prior and informed consent.
4. Human rights:
(a) Implementation of the United Nations Declaration on the Rights of Indigenous Peoples;
(b) Dialogue with the Special Rapporteur on the situation of human rights and fundamental freedoms of indigenous people and other United Nations human rights mechanisms.
5. Half-day discussion on Central and South America and the Caribbean.
6. Comprehensive dialogue with United Nations agencies and funds.
7. Future work of the Permanent Forum, including issues of the Economic and Social Council and emerging issues.
8. Draft agenda for the eleventh session of the Permanent Forum.
9. Adoption of the report of the Permanent Forum on its tenth session.
For more information on registration and other aspects of the meeting please check the Permanent Forum on Indigenous Issues website.
The SING Workshop is now accepting applications from Native American, Native Hawaiian, Alaska Native, or Canadian First Nation applicants (all expenses paid for those who are accepted).
According to the website, the goals of the program are as follows:
Facilitate discussion on indigenous cultural values and whether scientific methods can be beneficially incorporated with these values,
Provide awareness of how genomics is currently used as a tool to assist in projects focused on natural resources, history and biomedicine and
To increase the number of Native Americans in science research, leadership and teaching careers at all levels.
This promises to be an interesting and hand-on program in genomics education with involvement from critical scholars in both the genome and social sciences who understand the difficult histories surrounding Native American encounters with genomics, yet the need for Native American communities to tackle this area of science in ways that are in line with their biomedical, research, and governance interests.
See http://www.igb.illinois.edu/conference/sing for complete instructions as well as information on the curriculum, advisory board members [Kim TallBear is one of them], and sponsors.
Genomics, Governance, and Indigenous Peoples (November 6-7, 2008) gathered together 12 scholar practitioners to discuss the promise and perils of current efforts to transform indigenous peoples’ governance of genomic research. Invited participants included experts in human genetics and the social, legal, and ethical aspects of genomics in different national and cultural contexts. Individual participants have experience working within existing regimes of governance, and they see a need for policy innovation and change in relation to genomic research. Some participants are already engaged in experimental efforts to create change. Participants engaged in several facilitated dialogues organized around several themes including property, sovereignty, and the “politics of representation” (who represents whom and who decides?) First conceived as a workshop focused on the United States and “tribal” governance of genomics, the workshop has broadened to include scholar practitioners working in other parts of the world in recognition that strategies for governing genomic research cannot be contained by national borders. Workshop outcomes will be relevant for indigenous governance within multiple national contexts. They include an edited, multi-authored volume, and a policy paper focusing on the core themes of the workshop: property and various forms of sovereignty as those are informed by both domestic and international structures of law and policy. The workshop was funded by the National Science Foundation (NSF).
Back (left to right): Philip (Sam) Deloria, Brett Lee Shelton, Nanibaa’ Garrison, Terry Powell, Paul Oldham, and Kim TallBear. Front (left to right): Nadja Kanellopoulou, Jenny Reardon, Pilar N. Ossorio, Rebecca Tsosie, Brian Wynne, and Laura Arbour.
College of Law
Arizona State University (ASU)
Kim TallBear (University of California, Berkeley, UCB)
Jenny Reardon (University of California, Santa Cruz, UCSC)
Rebecca Tsosie (Arizona State University, ASU)