January 1 - December 31,2001
The IPCB has made new gains in its second year of operation. A few highlights include:
- Development of the Indigenous
Research Protection Act, a model ordinance for tribal governments to control research in their respective jurisdictions;
- A two-week speaking tour to Maori communities in Aotearoa (New Zealand) which included approximately 20 public speaking engagements and multiple radio broadcasts;
- Participation in several scientific forums addressing the ethics of research in indigenous communities;
- Publication of the newly revised and expanded “Indigenous Peoples, Genes, and Genetics”, a primer on biotechnology for indigenous peoples and others.
- Provided technical support to citizens of the Kingdom of Tonga who seek to intervene in a proposed agreement their government has made with Autogen Limited, an Australian corporation, for exclusive rights to Tonga’s human DNA.
IPCB has contributed articles to many journals, magazines, newspapers, and newsletters. Articles have been published in the Biotechnology and Development Monitor-Amsterdam, the Friends of the Earth Link Magazine-Amsterdam. Journalists for Civilization magazine and have included coverage of the IPCB.
We were pleased to present on globalization at several major forums: Globalization Teach-in at Concordia University in Montreal, Quebec, in Seattle; Big Money-Bad Science Forum hosted by the Council of Canadians in Vancouver; and the International Forum on Globalization Teach-In at Hunter College in New York.
In September 2001, we are looking forward to the publication of “Life, Lineage, and Sustenance: Indigenous People and the Genetic Engineering of Food, Agriculture, and the Environment”, a primer about the danger genetic engineering poses for food, agriculture, and the environment, and promotes lifestyles and practices which can protect genetic resources, promote biodiversity, and sustainable environmental practices.
We were delighted to welcome Dr. Ruth Hubbard as a new member to our Board of Directors. Dr. Hubbard, Professor Emerita of Biology at Harvard University, is well known for her book co-authored with Elijah Wald, "Exploding the Gene Myth” (Beacon Press, 1999), and is a long-time activist and critic of the negative impacts of biotechnology on society. Dr. Hubbard’s expertise, commitment, and energy is a welcome addition to the IPCB’s leadership. It is very likely we will add one or two additional board members in the upcoming two years.
Our efforts in FY-2002/03 will build on our previous accomplishments. We have developed a strong organizational base, and vast network of contacts in indigenous communities, thanks to the efforts of a dedicated staff and volunteers, and the leadership of a deeply committed board.
The program goals and activities of the IPCB focus on five distinct program areas:
- Technical support and intervention tribes impacted by genetic research.
- Broad-based Community Education throughout indigenous communities.
- Establishing Protective Policies: Tribal, Federal, International
- Publications and Media Campaign
- Collaboration and Networking
A brief report on work accomplished in these areas follows.
1. Technical support and intervention tribes impacted by genetic research.
The IPCB has conducted research into genetic studies involving the Navajo Nation, Rosebud Sioux Tribe, and the Hopi Tribe. Presentations and reports have been shared with the Tribal Councils at Rosebud and Hopi, and with the Navajo Nation Institutional Review Board (IRB). We are providing ongoing technical support to these tribes and work with their tribal leadership to establish protections within their respective jurisdictions. This work will require on-going support to insure the full adoption of policies and ordinances that protect the rights of these respective tribes. In addition, we have begun specific research into genetic studies impacting the Native Hawaiians and indigenous peoples in Paraguay, at the request of members of those communities. This data will be compiled and shared with these communities for follow-up.
2. Broad-based Community Education throughout indigenous communities.
An IPCB Board member met with the Alaska Native Fish and Wildlife Society in May 2001. This organization consists of local community members and tribal officials concerned with wildlife management in their communities. Several attendees at the meeting requested that IPCB help them develop more protective review procedures, to use as models against which to judge consent forms researchers currently offered them in genetic research projects. The attorneys on IPCB’s Board of Directors are currently developing a model for the requesting communities. As a result of the presentation in Alaska, IPCB has been invited to speak at the national meeting of the Native American Fish and Wildlife Society, and we have been asked us to speak at the National Native American Fish and Wildlife Society annual conference in Feb. 2002.
In January 2001, IPCB staff and a Board Member made presentations to the Great Basin Regional Repatriation Coalition, concerning genetic and other types of evidence in repatriation efforts. IPCB also distributed publications about genetic research and indigenous peoples to all interested participants. Also in January, IPCB staff met with the Chairperson and Repatriation Coordinator from the Fallon Paiute-Shoshone Tribe to discuss genetic research theories in the context of repatriation of ancient remains, including the remains found within the Fallon Tribe’s traditional territory at Spirit Cave. We continue to provide support to the NAGPRA Coalition on an on-going basis.
In July 2001, the Pyramid Lake Tribe requested IPCB to assist in evaluation of genetic research involved in proposed restoration plans for the threatened species, Lahontan Cutthroat Trout, in the Tribe’s Lake. Staff developed written materials explaining the different genetic research proposed for the restoration plan, and gave a presentation to the Fisheries Department, Tribal Council, and other interested community members on the various options the Tribe was facing. Follow-up work includes technical assistance in developing a tribal research review committee and ultimate passage of a tribal ordinance to govern research projects.
We set up an information booth at the Aberdeen Area Health Board annual conference, and conducted interviews on the tribal radio stations KILI radio on Pine Ridge, and KINI on the Rosebud Sioux Reservation in South Dakota. We’re currently working with the Cheyenne River Sioux and Porcupine community on the Pine Ridge Reservation in South Dakota, and expect to do more follow-up there.
In June, IPCB presented an informational workshop on indigenous peoples and genetic research to the Rosebud Sioux Tribal Council in June. This workshop was also broadcast live across the Rosebud and eastern Pine Ridge Reservations, on KINI radio 96.1 FM. We also held a discussion on regulation of genetic health research with the Rosebud Health Department. The Council’s Health Committee is planning to introduce legislation to regulate on-reservation research, including genetic research. We will continue to work with the tribe to insure protections are put in place.
IPCB has held two meetings with the Navajo Nation Research Review Board, in April and June 2001. The first meeting was to provide education about genetic research and indigenous people. That meeting led to an invitation to meet with the Navajo Nation’s Research Review Board, staff, the Navajo Nation Medicine Men’s Association, and other interested community members at the Navajo capitol of Window Rock. Topics of discussion included potential risks of genetic research and strategies for protection. The Research Review Board plans to introduce to the Navajo Tribal Council legislation to regulate research. We will work with the Navajo Nation through a projected six-month process to get the proposed legislation ready for action by the Navajo Nation.
In June 2001 the IPCB staff made a presentation to the Hopi Tribal Council, at the request of the Hopi Health and Human Services Department, on genetic research and indigenous peoples, and strategies for protection in the federal and tribal systems. The Health and Human Services Department plans to introduce a Tribal Ordinance to regulate health research, and has requested IPCB to assist in this effort and in coordination with the Hopi Cultural Resources Department. The IPCB will continue to work with the Hopi Tribe in the development of their policies. Tribal council members also asked IPCB to conduct a workshop with their high school students.
The IPCB conducted a workshop on the ethical problems and current status of genetic research targeting indigenous populations, to a broad-based contingent consisting primarily of activists from northeastern tribes, at the annual gathering of the Indigenous Women’s Network in Fonda, NY. Follow up work planned with the Akwesasne Mohawk Task Force on the Environment for education sessions in the region.
3. Establishing Protective Policies
IPCB’s work with local communities and tribal officials has started to show fruit in that tribes are now approaching IPCB for assistance in developing measures to protect against harms from genetic research on their people or within their jurisdictions. The Health Departments of the Hopi Tribe and the Rosebud Sioux Tribe, as well as the Research Review Board of the Navajo Nation, have all requested IPCB’s assistance in developing tribal legislation designed to allow the tribes to protect themselves from bad research. IPCB has provided preliminary assistance, and stands ready to provide whatever technical assistance we can to see the projects through. The Cherokee Nation IRB has requested that IPCB provide training programs on genetic research, with an eye towards ensuring that Cherokee policy is as protective as possible. The Leech Lake Band of Chippewa has utilized IPCB’s model legislation, the Indigenous Research Protection Act, as a model for legislation it is developing. Finally, the Pyramid Lake Paiute Tribe requested IPCB’s assistance in evaluating proposed genetic research connected with a federal plan for recovery of Lahontan Cutthroat Trout, and Tribal Council members have indicated a desire to use this as an opportunity to institute policies that protect the Tribe and it’s environment from unwanted research. We will follow up with these tribes through completion of policy development.
Activities: IPCB has focused primarily on making inroads into key areas of the National Institutes of Health. This work has paid off, in that we have made connections that guide us through the NIH policy process, and we have brought our message about the necessity of tribal consultation to some sympathetic ears within NIH. In January, IPCB staff met with staff at the National Institute of General Medical Studies and the Indian Health Service (IHS) Director of Research to discuss problems with research done in the past, and strategies for better protection. NIH and IHS sponsored a forum called the “Genetic Research Policy Formulation Meeting” in March in Rio Rancho, NM. One result is IPCB staff have agreed to work with NIH staff and other interested individuals on working committees that are drafting guidelines for genetic researchers who want to do research in Indian Country, for IRBs that evaluate genetic research projects targeting indigenous people, and for funders of genetic research. The IPCB staff and the Chairperson of the Board participated in another forum sponsored by NIH, in April in Aspen, CO. This meeting was convened in connection with a project of the University of Colorado Health Sciences Center that is attempting to examine the ethical issues implicated in genetic research involving American Indians and Alaska Natives. We are continuing discussions with the U-Colorado staff about education outreach to tribes.
IPCB has drafted a review of one of the more authoritative critiques of the present federal human subjects protection system (the IRB system or the “Common Rule”)— the National Bioethics Advisory Committee Review. This review is done from the standpoint of how the NBAC review and associated recommendations would improve the situation for indigenous people. This review shows how proposed policy changes could help indigenous people, and what more would still need to be done. This document will be shared with tribal leaders to encourage them to seek better stronger protections. This work may culminate in making changes to the Code of Federal Regulations, but that will depend on the level of interest and leadership provided by tribal leaders and their willingness to take up the issue. IPCB can provide advocacy and technical support to this effort.
IPCB staff and board presented on genetic and other evidence in repatriation disputes, at a meeting of the Great Basin Intertribal NAGPRA (Native American Graves and Repatriation Act) Coalition, in January. IPCB staff also provided an overview of genetic research and repatriation to the Cheyenne River Sioux Tribe Cultural Preservation Director, in June. We are also providing support to the Chairperson and Repatriation Coordinator of the Fallon Paiute-Shoshone Tribe. In July, IPCB also started discussions with the Pyramid Lake Paiute Tribe about measures that could prevent genetic analysis of remains currently held by the State of Nevada and the federal government.
In the future we will develop a “Briefing Paper on Repatriation and Genetic Evidence/Research” for widespread distribution, and focus on building relationships with tribal cultural preservation offices and programs across the country as a new point of entry with tribal communities.
4. Publications and Media Campaign:
The IPCB has completed production of two new briefing papers, “Genetic ‘Markers’Not a Valid Test of Native Identity” and “Genetic Research and Biowarfare: What’s the Connection?” We have also compiled these two papers, along with two other papers, “Did You Know...” (a snapshot of genetic research projects) and “Consent and Consultation in Genetic Research on American Indians and Alaska Natives”. These are compiled in a briefing booklet, and will be widely distributed in Native communities.
IPCB’s longer work, Life,
Lineage, and Sustenance, an approximately 50-page primer that discusses genetic research and impacts on food, wildlife, and the environment is due to be printed and available in early September, 2001. This also will be distributed widely, advertised on the internet, and posted to the IPCB website. IPCB is also developing a critique, from the standpoint of indigenous people and nations, of the current human subjects protection system under federal law. This paper will provide a more detailed explanation of the informed consent and tribal consultation requirements discussed in the IPCB briefing paper, “Consent and Consultation in Genetic Research on American Indians and Alaska Natives”. We are currently developing additional briefing papers on “Genetic Research and Diabetes”, “Genetics and Repatriation”, and a “Briefing Paper on Human Cloning”, and complete a new radio program (2 half-hour segments). The IPCB website is undergoing reconstruction and is being updated with all new materials.
We will develop four new briefing papers on pertinent subjects and complete a new radio program (2 half-hour segments). We will also draft 2 articles per year for tribal papers. The IPCB will provide regular updates to our constituency through our listserve email distributions.
In January, the Council for Responsible Genetics published a review of IPCB’s Indigenous
Peoples, Genes, and Genetics in the CRG publication GeneWatch. The January/April issue of Splice magazine in the UK included the article “The New Wave of Colonialism” by IPCB’s Executive Director. The Winter 2001 issue of Earth Light magazine included and article by IPCB entitled “Biocolonialism in the Age of Genetics. The April 2001 issue of Atlantic Monthly magazine featured a paragraph of quotes from IPCB’s Executive Director in its article discussing the Human Genome Diversity Project, “The Genetic Archaeology of Race.” The June 2001 issue of Pacific Watch magazine recognizes the work of IPCB’s Executive Director and Director of Policy and Research in the article, “Tongan Government Officials Deny Agreement to Sell Human DNA.”
5. Collaboration and Networking
Activities: We will remain actively involved with a wide range of regional, national, and international networks of biotech activists, and indigenous peoples organizations. The boards of the three collaborating organizations, IPCB, CRG and PANNA, will be meeting in November 2001 in Boston at the CRG’s No Patents on Life Conference.
In the South Pacific, the IPCB staff made presentations to the Royal Commission on Genetic Engineering in Aotearoa (New Zealand) and served as resource persons to the South Pacific Bio-Ethics Consultation in Tonga.
We were pleased to present on globalization at Concordia University’s Globalization Teach-In in Montreal, and the International Forum on Globalization Teach-In at Hunter College in New York. The IPCB will also provide a written contribution to a new publication on “Globalization and Indigenous Peoples” to be published by the International Forum on Globalization, as well as participate in an effort to build more awareness of globalization among indigenous leaders and communities.
In January, IPCB presented on genetic research and federal policy’s impact on native nations, at a meeting of the Washington, DC area Native American Bar Association. The audience consisted of a variety of native attorneys, whose careers include work for different federal agencies, for Congress, and private practice serving Indian Tribes and Alaska Native Corporations and Villages. In February, the Director of Policy and Research participated in the Consensus Development Conference on Emerging Ethical Issues in Smoking and Genetics, convened by Georgetown University. The participants, almost exclusively academics and federal officials involved in behavioral genetic research, took stock of ethical issues that have started to become apparent in various research projects.
IPCB’s Director of Policy and Research also participated in the workshop, “Owning Up: Bodies, Selves, and the New Genetic Property,” sponsored by Harvard University’s Kennedy School of Government in May. This workshop convened academicians, activists, and legal professionals to discuss the legal framework and driving forces behind expropriation of genetic resources and information.
The IPCB annual budget need for FY 2001 $242,200. We received funding from the following donors: the CS Fund, the Foundation for Deep Ecology, the Stillwaters Fund, the Burr Oak Fund, Solidago Foundation, Veatch Program, Seventh Generation Fund, and Fund of the Four Directions. In addition, we will work to expand our base of individual donors through our “Biowarriors Society” donor annual program.
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