Indigenous Blood and Ethical Regimes in the United States and Australia Since the 1960s (original) (raw)
Related papers
Orphan DNA: Indigenous samples, ethical biovalue and postcolonial science
Social Studies of Science, 2013
Thousands of blood samples taken from Australia’s indigenous people lie in institutional freezers of the global North, the legacy of a half-century of scientific research. Since those collections were assembled, standards of ethical research practice have changed dramatically, leaving some samples in a state of dormancy. While some European and American collections are still actively used for genetic research, this practice is viewed as unethical by most Australian genetic researchers, who have closer relationships with indigenous Australians and postcolonial politics. For collections to be used ethically, they require a ‘guardian’ who has an ongoing and documented relationship with the donors, so that consent to further studies on samples can be negotiated. This affective and bureaucratic network generates ‘ethical biovalue’ such that a research project can satisfy Australian ethical review. I propose in this article that without ethical biovalue, collections become ‘orphan’ DNA, d...
Public participation in medical research and biobanking is considered key to advances in scientific discovery and translation to improved health care. Cultural concerns relating to blood have been found to affect the participation of indigenous peoples and minorities in research, but such concerns are rarely specified in the literature. This article presents a review of the role of blood in Australian Aboriginal cultures. We discuss the range of meanings and uses of blood in traditional culture, including their use in ceremonies, healing, and sorcery. We draw on more recent literature on Aboriginal Australians and biomedicine to consider how traditional beliefs may be changing over time. These findings provide an empirical basis for researchers and bioethicists to develop culturally grounded strategies to boost the participation of Aboriginal Australians in biomedical research. They also serve as a model for integrating anthropological literature with bioethical concerns that could be applied to other indigenous and minority groups.
Collective Biopolitics The Rights of Indigenous Peoples in Genetic Research
2019
This essay considers issues implicated in biobanking with indigenous peoples, a population increasingly recognized as having a collective right to participation under international law (e.g., the United Nations Declaration on the Rights of Indigenous Peoples (2007)). In contrast, prevailing notions of participation within the field of human rights (including the right to health) presuppose an individualist notion of citizenship. This essay compares the indigenous collective right to participation with “molecularized biopower”, the theory that biopolitics in modern democracies is becoming increasingly individualized in an unprecedented way. Using a US biobanking case study, this essay argues that two aspects of the indigenous collective right to participation (i.e., self-determination and the “empowerment” framework), not only counter the claim for a pervasively individualized biopolitics, but also demonstrate the importance of collective rights for indigenous participation in geneti...