January 1 to December 31, 2000
1. Research and Data Collection:
The IPCB has compiled a substantial collection of academic articles reporting genetic research on indigenous peoples around the world. We compile and analyze the data to identify target populations, sample sources and methods, informed consent provisions, researchers involved, and funding sources. Data is maintained in a database, backed by indexed hardcopy. IPCB uses the data to analyze research trends, and to identify potential violations of human rights. Information in the database is freely available by request. The IPCB Board of Directors has not yet decided to make the data itself freely available via the internet. The Board is concerned that making certain data freely available will give researchers easier access to unique biological samples from peers, thereby increasing secondary uses of genetic samples without consent. IPCB has developed research reports summarizing some of the issues raised in the analysis. This document, “Summaries of Selected Genetic Studies Involving Indigenous People,” is provided to Native Americans to reveal the current uses being made of Native American genetic samples.
2. Community Education, Technical Assistance and Intervention:
The IPCB provides educational and technical support directly to indigenous communities through written materials, direct correspondence, and in public meetings and conferences. The IPCB has given educational workshops and presentations to the following native organizations: Union of British Columbia Chiefs conference on Intellectual & Cultural Property Rights in Vancouver; the Native American Studies “Sovereignty 2000” conference at UC-Santa Cruz; Western Shoshone Defense Project Spring Gathering, Crescent Valley NV; Native American Journalist Association Annual Conference workshop on Environmental Journalism in Ft. Lauderdale FL; National Indian Health Board national board meeting, Washington DC; Sioux Nation Treaty Conference, Wakpala SD; Seventh Generation Fund Sustainable Communities Conference, Wewoka, OK; National Indian Health Board National Consumer Health Conference, Billings MT; conducted an intensive15 day speaking tour and biotech organizer training for Maori communities throughout the North Island of Aoteoroa (NZ) in September, made possible with a $2,000 travel grant from the Philanthropic Collaborative; and the California Rural Indian Health Board’s Tribal Government Consultation committee in Lake Tahoe, CA.
3. Establishing Protective Policies:
Local Protections: The IPCB has developed a comprehensive model ordinance for tribal governments, the Indigenous Resource Protection Act (IRPA), that could afford real protection at the local level. The IRPA is designed to protect against all unwanted collection and commercialization of: DNA from indigenous people; DNA from non-human species within the tribal environment; and cultural and intellectual property rights of indigenous nations and individuals. It also contains provisions that summarize general ethical principles relevant to research and indigenous peoples. It is a model that can be adapted to fit each tribe’s particular jurisdictional situation. IPCB is actively promoting IRPA to tribes across the United States. Although the Act was just released in early October, at least two tribal councils are considering adopting the Act, and three regional tribal organizations, representing over 160 tribes, plan to discuss and promote the Act with their members at their next quarterly meetings. The IPRA can be easily adapted into legal frameworks beyond that of US and tribal laws. Already, IPCB has responded to requests from Maori in Aotearoa (NZ), Canadian First Nations, Latin America, and India, for copies of the act and technical assistance on how it can be adapted to their situations.
Federal Policy: IPCB is working to establish policies at the national level that would protect indigenous peoples’ rights. We are currently drafting a critical analysis of the existing federal protections of human subjects in research, mainly at 45 C.F.R. Part 46, in order to draft proposed changes that address protections specific to tribal peoples and cultures. The IPCB board chair and executive director participated in the National Institutes of Health’s (NIH) “First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research”, sponsored by NIH, the National Science Foundation, and Department of Energy. The NIH acknowledges a need for direct consultation with tribes affected by their programs, and for further dialogue on the protection of group rights in genetic research. In March, the Executive Director of IPCB participated in at a conference evaluating the effectiveness of “Ethical, Legal, Social Implications (ELSI) Funding for Affected Groups”, held at Harvard’s Kennedy School of Government.
IPCB played an active role in advocating for changes in the current US Patent and Trademark Office (USPTO) policies that are contributing to violations of indigenous peoples human rights. IPCB submitted comments to the USPTO requesting that patents not be granted over life forms, in the context of the PTO’s reconsideration of the guidelines for applying the “utility” requirement in patent applications. Additionally, IPCB drafted and distributed a similar comment letter, for other activist and civil society organizations to submit to the USPTO.
Professional and Scientific Associations: IPCB also fosters better protective policy development by encouraging professional organizations to take indigenous rights seriously in their own codes of ethics and policies. This year, the IPCB staff and board members have presented at the Public Interest Law Conference, Eugene OR; the American Society for Bioethics, Philadelphia PA; and the American Anthropological Association Annual Conference in San Francisco.
Repatriation Policy: Native American remains, held in museums and private collections throughout the country, are seen increasingly as a valuable source of DNA to satisfy the curiosity of genetic anthropologists. IPCB has focused efforts prevent further desecration of human remains mainly in the context of regulations and implementation policy under the Native American Graves Protection and Repatriation Act (NAGPRA). IPCB addressed the issue through the administrative review body of the Act, the NAGPRA Review Committee. Staff wrote testimony for the Review Committee, as well as for a tribal leader, who represents a tribe that has several sets of ancient remains from their ancestors in museums targeted for DNA sampling, in spite of the fact that DNA analysis can provide no useful information in the repatriation of the remains. The testimony pointed out that DNA analysis can be of no utility in determining tribal affiliation, since tribal affiliation is a cultural/social construct; cannot provide definitive evidence of tribal affiliation; is not required under the law; and can only cause irreparable harm and violations of human rights of native people. In July, an IPCB Board Member played a key role in Congressional oversight hearings into the implementation of NAGPRA. One of the primary focuses of the hearings was the unsuitability of DNA analysis to provide useful information, and problems with federal authorities nonetheless assisting scientists obtain samples from ancient remains.
International: Globalization of the economy, particularly with respect to intellectual property rights, is a significant factor in the quest by scientists and corporations to “control” indigenous DNA and knowledge. In May, the Executive Director testified on a panel on Protecting Traditional Knowledge on the Day of the Indigenous People at the 8th Session of Commission on Sustainable Development of the United Nations.
Additionally, IPCB addressed the issues of globalization and international intellectual property rights trends, and their impacts on indigenous peoples, as a plenary speaker at the National Network of Grantmakers annual conference, the Biodevastation 2000 conference in Boston, and the No Patents On Life Teach-In and the Indigenous Peoples Forum at the WTO demonstrations in Seattle. IPCB’s Director of Policy and Research spoke about ethical concerns for native people and the necessity for tribal consultation, on a panel at the International Society for Ethnobiology in Athens GA. In Aotearoa/New Zealand, IPCB staff made a presentation to Maori members of Parliament on genetic research and impacts on Maoris. The staff also held a private briefing with two national government officials, on biodiversity and on the status of indigenous opposition to genetic research and strategies for protection. The briefings focused on the current state of affairs in Aotearoa/New Zealand and strategies for protection of indigenous rights in the national setting. IPCB participated in a teach-in on globalization called “Big Money, Bad Science” sponsored by the Council of Canadians, and the Biotechnology Action! Resistance Network’s forum on building resistance to the biotechnology industry, both events in Vancouver BC on Nov. 10-11, 2000.
4. Publications and Media Campaign
IPCB has developed several publications for distribution primarily to our indigenous constituency, however there has been widespread interest in these resources by the broader public. The most significant is the newly revised “Indigenous
Peoples, Genes, and Genetics: What Indigenous Peoples Should Know About
Biocolonialism” a primer and resource book developed to help indigenous people understand the science of genetics and some of the ethical and human rights issues raised by the science. IPCB printed 2000 copies of this book, and distributes it at every opportunity. This publication is also available on the IPCB web page in PDF and HTML formats for on-line viewing or download.
Another significant publication, “Life, Lineage, and Sustenance: What Indigenous Peoples, Genetic Engineering and Agriculture” is near completion. This publication explains biopiracy and genetic engineering as it is occurring on non-human species, and also discusses some of the concerns this field of genetics raises for indigenous peoples. The primer is currently scheduled for printed for publication and distribution in the Spring 2001.
In addition to these major publications, IPCB is producing briefing papers to cover sub-issues for indigenous people in genetics. Issues already addressed include “Consent and Consultation in Genetic Research on American Indians and Alaska Natives”, “Summaries of Selected Genetic Studies Involving Indigenous Peoples,” and “Briefing Paper on Population Genetic Research”.
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, and National Network of Grantmakers News. In 2000, we participated in over 21 radio programs in the United States, Canada, and Aotearoa/New Zealand. Many of these programs were national programs such as the June 26 edition of Democracy Now with Amy Goodman, or potentially broadcast via satellite to other stations. Journalists for Civilization magazine, UNESCO Sources, American Medical News, Saint Louis Dispatch, and Indian Country Today have included coverage of the IPCB. In New Zealand, IPCB staff were interviewed on video for two film productions on genetic engineering and indigenous peoples. Both programs will be produced for national airplay in Aotearoa/New Zealand, and internationally distributed.
Collaboration and Networking:
With a two-year funding commitment from the Educational Foundation of American, the IPCB, the Council for Responsible Genetics (CRG) and the Pesticide Action Network North American (PANNA) have formed a unique model for social change that has greatly diminished duplication of efforts, eliminated competition, joined staff from differing organizations working on common problems, and created entirely new perspectives on how the social challenges of biotechnology can be addressed. The three collaborating organizations have established joint mechanisms for working together, sharing data and planning both overlapping and complementary work. The EFA grant provides direct general support funding to the three organizations, and allocated a small amount to support collaborative activities. These funds will be used to enable the boards of the three organizations to meet in the year 2001, and establish the joint mechanisms necessary for collaboration and information sharing (ie. Website and listservs).
The IPCB is actively involved with the Blue Mountain Group, a network of biotech activists organizations established at a strategy retreat in Oct 99. We continue to hold discussions with a small network of African American leaders to bring African American and Native American constituencies together to jointly analyze and address issues raised by human genetic research for distinct targeted groups. We also participated in the dialogues organized by the Exploratory Initiative on the New Human Genetic Technologies to explore possible national/international strategies to set limits on the genetic manipulation of human biology, focusing on cloning and germ line manipulations.
The IPCB has received major grant support from the following donors: the Educational Foundation of America, the CS Fund, Medora Woods, Seventh Generation Fund, Star Fire Fund, Solidago Foundation, Unitarian Universalists Veatch Program at Shelter Rock, Stillwaters Fund of the Tides Foundation, the Fund of the Four Directions, the Foundation for Deep Ecology, and the Philanthropic Collaborative.
The IPCB also launched an individual donor program that allows donors to give contributions and join the IPCB’s “Bio-Warriors Society” on an annual basis. Donors to the IPCB Biowarrior’s Society in FY 2000 include: Taiwan Aboriginal Cultural and Education Foundation, Mary Harrington and Marty Teitel, Marjorie Van Cleef, Jewell Handy Gresham Nemiroff, Bob Lantaff, Brett Lee Shelton, Ruth Hubbard, Jeanette Wolfley, Kathleen Pickering, Judy Norsigian, Debra Harry, Richard S. Gottlieb, and Margaret Eberle.
Staffing: The IPCB has two full-time staff including Debra Harry, Executive Director, and Brett Lee Shelton, JD, hired in late February, 2000 and serves as the Director of Policy and Research. Mr. Shelton (Lakota) is an attorney with expertise in health policy and federal Indian law. In addition, the IPCB hosted three interns during the year, through its visiting scholars program. Stephanie Howard, formerly with the Amsterdam-based biotech activist organization A-Seed, interned with the IPCB for three-months. During that time she drafted an extensive research document called “Indigenous Peoples, Genetic Engineering and Agriculture” which will be published as a briefing paper by the IPCB and made widely available on our website. Sophia Cleland, a Native American doctoral student in genetics at Cornell University, interned with the IPCB for six weeks. She conducted extensive research on genetic research affecting indigenous peoples, examined possible secondary uses of genetic samples without consent, and developed a briefing paper on “Indigenous Peoples and Human Population Genetics”. The third intern, Jacquetta Swift, a Native American graduate student in Native American Studies at the University Arizona, Tucson, interned with the IPCB for four weeks. She conducted research and developed a briefing paper on the limitations of the use of genetics in determining tribal identity and Native American ancestry.
Tax-Exempt Status: On January 18, 2000, the Internal Revenue Service issued an advance determination letter recognizing IPCB’s tax exempt status under Internal Revenue Code Section 501(c)(3). The application process went very smoothly. During IPCB’s application period, the IRS only issued one request for clarification, and after receiving IPCB’s response, issued the letter.
Establishment of Office Facilities: The IPCB took occupancy of a building in Wadsworth, NV in July, 2000. It was necessary to purchase office furniture, three new computer stations, a laser printer, and fax machine. Three phone lines were installed and internet connection established.
Printing: The IPCB developed and printed organizational brochures, letterhead, “Biopiracy” campaign buttons and “Bio-warriors Society” donor buttons.
Financial Management: The IPCB has hired an accountant on contract for management of all finances. In addition, we have established a money-market savings account to earn interest on grant funds received but not being used immediately.
>> Annual Report - 2001
>> Annual Report - 2002
Return to Top