Sovereignty Panel Rapporteur Report
Genomics and Justice Session 3: SOVEREIGNTY
05/18/07: 1:45 -3:00pm
Rapporteur Report prepared by Natalie Purcell (UCSC Sociology)
Malia Fullerton, Assistant Professor, Department of Medical History and Ethics, University of Washington
Rebecca Tsosie, Lincoln Professor of Native American Law and Ethics; Executive Director, Indian Legal Program, Arizona State University
Laura Arbour, Pediatrician, Clinical Geneticist, Vancouver Island Health Authority, Victoria, BC; Associate Professor, Department of Medical Genetics, University of British Columbia
Fullerton introduces Rebecca Tsosie.
Developing an inter-cultural perspective on justice means looking at how the concerns of native peoples relate to others’ concerns. And they do relate. For all of us, law is a product of power that negotiates the relationship between the individual and social ethics. In working inter-culturally, we must “look for universal points of connection.” This requires compassion, and we must ask whether compassion is possible within our institutional frameworks. First, we have to look at the historical and contemporary role of colonialism and globalization in sustaining injustice. Second, it’s important to recognize the significance of spiritual values and ethics: people cannot enter public discourse and leave their spiritual values behind. Yet native peoples are required to function, in some sense, under Western systems of law and discourse that don’t incorporate native peoples’ ways of knowing.
Legally, native peoples in this country are “domestic dependent nations.” Although they have self-governing privileges, they are under the tutelage of the United States. The US government can enact legislation that either removes their rights or grants them special rights. Native peoples in the US have what is called a “right of occupancy” or “aboriginal title,” but they have this right only unless and until the United States takes it away by purchase or by conquest.
If we are going examine the relationship between justice and the law, we must look at what is currently happening in native cultures. [Off the record examples provided.] A central concern is the ill fit between existing tort categories and the real harms done to native peoples. Tort categories operate in terms of harm to the individual; they do not register harm to the tribe and they certainty do not address harm to collective identities and cultures. In general, tort law works only with measurable and operationalizable harms. Anglo-American law has no “cognizable categories” to deal with cultural harm. With respect to genomics, there is a huge threat involved in the possibility that tribal membership will be legally defined on a genetic basis. Using genetic criteria to legally establish or deny membership may follow the same path as old blood requirements, serving as a tool to further colonize and dismantle the native communities.
Most centrally, we need to see injustice in historical and intergenerational terms: “The injustice happened and is happening.” Tough questions follow. When looking at the negative trends and societal problems of native peoples, should we look at genes or should we make every effort to keep the focus on the economic, social, and psychological trauma that results from dispossession and causes a host of problems? What is justice in terms of the health and well-being of the native community?
Fullerton introduces Laura Arbour.
Before beginning her talk, Arbour shares her sense that, if genetic information is used in an effort to identify members of a group, it can include but can never exclude. Definitive exclusion is not really possible because we will likely not know all of the possible polymorphisms associated with ancestry.
Arbour then begins her discussion about aboriginal health and child health in Canada, where aboriginal peoples (4% of the population) often face “remoteness” and consequently more challenges in accessing to health care. In Arbour’s work, developing research relationships is important. Although there are various existing guidelines for carrying out health research with Canadian aboriginal communities, we need to be comfortable with a system wherein community involvement is “second nature”. A participatory approach to research should be routine. Thus, protocols should be brought before community health or research boards (primarily), and the research discussed with these boards every step of the way. In conducting community-based participatory research, it is important to understand the community’s needs for ownership, control, access, and participation throughout the process.
The principle of DNA on Loan is one example of how this might work with respect to the collection of biological samples. The DNA on Loan principle affirms that the researcher never owns the samples collected. They are only borrowed for the purpose of that project, and they can be returned on demand at any time. They are the property of the donors and the community involved.
More broadly, community consultations and consent should be involved in the research process, from design to analysis. In working collaboratively with one community to fight Long QT Syndrome, the research advisory board that Arbour was involved with (and the research assistants) were community members. Collaboratively, they worked to explore the impact of living with this condition and to bring care-access to the community. In general, we cannot even think about the scientific contributions of research unless we deal with care-access problems at the same time.
Many challenges are involved in community-based participatory research. For instance, how should a researcher recognize the community in his/her work? Do you name them or not? How do you balance the need to publish results quickly with the slow processes of community involvement and negotiation? In grappling with these and other issues, Arbour has been involved in the development of the Canadian Institutes of Health Research Guidelines for Health Research Involving Aboriginal Peoples. These Guidelines were developed by a working group consisting of Aboriginal and non-Aboriginal participants. The development process involved extensive consultation among Aboriginal individuals and communities, as well as research stakeholders. These guidelines include the following principles (among others): (1) understanding and respecting Aboriginal world views (as truth), (2) creating community jurisdiction over the research and the data collected, (3) providing the option of a participatory research approach, (4) respecting cultural knowledge and sacred knowledge, (5) adopting the “DNA on Loan” principle, and (6) involving the community in data interpretation.
When it comes to research involving biological samples, the genetic materials travel beyond the bodies they belong to, which creates complications for standard research subject protection policies.
Even when communities and donors own their biological samples, the information contained therein can travel widely, which complicates what it means for communities to have jurisdiction over these materials. The use of secondary data, data analysis, and the various types of information derived from the samples should be incorporated into research agreements.
In the human rights arena, there are real efforts to consider the tangibles as well as the intangibles. This should include the knowledge gained from the community and from the samples community members provided.
When it comes to tying genetics to wider healthcare needs, what is the viability of developing as a norm the practice of genetic researchers advocating for other healthcare needs of the people they are working with?
Broad-based advocacy can be based on what you’ve learned in working with the community.
Audience Member [?]:
How do you accommodate groups that do not want to participate in developing guidelines or who want to exclude themselves from research? Is this an exercise of sovereignty or an indication of colonization from the get-go?
In the United States, tribes usually do have the sovereignty to opt out. But things still happen at the macro-level that affect the tribes although the tribes aren’t consulted. It’s not clear that “opt-out” will always be a possibility.
When it comes to principles like “DNA on Loan” or even “calling a favor a favor”, we are dealing with informal norms not laws. In terms of legal remedies for those who do feel harmed, is tort the only legal remedy they can seek?
The problem with tort is its inability to deal with harms outside of an individualized and measurable framework. Tort law cannot deal with injuries to culture and identity. However, contract law may be another option. This is only operative in the exceptional case of a clear research contract agreement.
There are small things you can do to make these norms enforceable like inserting the language of contract into the research agreement.
Although “DNA on Loan” in integrated into our documents, in practice it really requires that the researcher choose to keep their part of the bargain. The researchers are not really legally accountable for upholding that bargain, but research funding can be withheld if CIHR supported guidelines are not adhered to.
How do “DNA on Loan”-type principles work in the face of NIH and university efforts to consolidate and centralize data gathered from research with biological samples? What happens when this information is subject to conflicting ownership claims?