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Accepted Paper:

Data sharing in social genomics as infrastructure for managing controversy  
Bennett McIntosh (University of Wisconsin Madison)

Short abstract:

Social genomics, which studies genetic correlates of social outcomes, has built a cohesive research community thanks to inconsistent openness. Its approaches to data sharing successfully manage, but do not resolve, controversies over its understanding of human difference and social inequality.

Long abstract:

“Social genomics” research attempts to correlate human genetics with social phenomena such as educational attainment and wealth. Its growth in recent decades, from sample sizes of hundreds to millions, relies on mobilizing genetic and phenotypic data from government, academic, and corporate platforms; these data were usually originally collected for other purposes, including biomedicine and genealogy. Openness is thus a desideratum in social genomics, as in other data-centric sciences, but it has a complex relationship with other principles, including individual privacy, intellectual property, and equity.

This paper examines how social genomic researchers have sought or refused openness, and how this has structured the community’s norms, epistemology, and even membership. A young research program on the interstices of the life and social sciences, social genomics lacks many disciplinary structures that, in other sciences, would determine which research is encouraged or discouraged. The stances data-sharing platforms take towards openness have thus taken an outsize role in shaping this community. For instance, they request data from others in the name of understanding and reducing inequality, but use technical, legal, and rhetorical means to discourage data sharing for undesirable research, for instance, labeling certain inter-group comparisons as discriminatory and unscientific. To constrain downstream uses, data may be shared or not shared, abstracted or synthesized, or accompanied by binding or non-binding instructions proscribing immoral or unscientific uses. By focusing on openness as merely a matter of sharing (or not) scientific objects, social genomics has managed, but failed to resolve, controversies about its epistemological and moral principles.

Traditional Open Panel P095
Interrogating openness and equity in the data-centric life sciences
  Session 2 Tuesday 16 July, 2024, -