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A Critique of Genomics Research through the Lens of Justice
Methods Using a normative approach, we defined justice through a capabilities framework - as opportunities to create genuine capabilities. This definition was then applied to evaluate a two-tiered approach to social justice in genomics research - justice in the short-term ( from a recognition perspective) and justice in the long-term (from a redistribution perspective).
Results We identified that lack of genomic research on diverse populations leads to inequality of opportunities and could lead to a hermaneutical injustice in the genomics research agenda. Lack of genomic research on minority populations contributes to a lack of knowledge on the genetic variation, and the effect of these variation in those populations.
Discussion It is important to include all groups of people as participants in genomic research in order to ensure justice in both the process of research and the translated outcomes of research, and also to guarantee that the fruits of research benefit society as a whole.
Learning Areas:
Ethics, professional and legal requirementsPublic health or related research
Learning Objectives:
Define what constitutes justice.
Evaluate if genomics research is just.
Identify gaps in the genomic research agenda that could lead to unjust outcomes.
Discuss potential ways to ensure the tools from genomic research benefit society as a whole.
Keyword(s): Ethics, Genetics
Qualified on the content I am responsible for because: I am a graduate student working on my PhD in an interdisciplinary program on public health genetics. Among my research focus are genetic epidemiology and the ethics of genomics research. I am funded as a research trainee by the UW Center for Genomics and Healthcare Equality.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.