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  1. From biocolonialism to emancipation: considerations on ethical and culturally respectful omics research with indigenous Australians.Gustavo H. Soares, Joanne Hedges, Sneha Sethi, Brianna Poirier & Lisa Jamieson - 2023 - Medicine, Health Care and Philosophy 26 (3):487-496.
    As part of a (bio)colonial project, the biological information of Indigenous Peoples has historically been under scientific scrutiny, with very limited benefits for communities and donors. Negative past experiences have contributed to further exclude Indigenous communities from novel developments in the field of omics research. Over the past decade, new guidelines, reflections, and projects of genetic research with Indigenous Peoples have flourished in Australia, providing opportunities to move the field into a place of respect and ethical relationships. This review explores (...)
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  • Coming to Grips with Genetic Exceptionalism: Roots and Reach of an Explanatory Model. [REVIEW]Ilhan Ilkilic - 2009 - Medicine Studies 1 (2):131-142.
    Is genetic information different from other types of medical information and is therefore a special treatment required because of its special features? This question has been discussed since the mid-1990s under the label of genetic exceptionalism. This article discusses the essential arguments of the genetic exceptionalism discourse and analyzes their ethical reach. The primary question of this paper is whether the arguments of the current debate, with its predominantly scientific focus, are capable of solving the ethical questions raised by genetic (...)
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  • Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel.Stephanie M. Fullerton & Sandra S.-J. Lee - 2011 - BMC Medical Ethics 12 (1):16.
    Background: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel. Methods: Using a combination of keyword (...)
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