Abstract
In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in the everyday routines of scientific work. This paper starts by examining the practices of a Danish laboratory highly experienced in collaborating cross-nationally on genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns sit alongside them? We explore what we call the flows, the non-flows, and the overflows of material and information, and we document the work that produces the flows of health data and biomaterial. We call this work "ethics work" and argue that it is crucial for data sharing, despite rarely being included in ethics policies, remaining inadequately funded, and lacking acknowledgment in policies promoting international data sharing.
| Translated title of the contribution | Ethics Policies and Ethics Work in Cross-national Genetic Research and Data Sharing: Flows, Nonflows, and Overflows |
|---|---|
| Original language | French |
| Journal | Revue d'Anthropologie des Connaissances |
| Volume | 13 |
| Issue number | 2 |
| Pages (from-to) | 455-478 |
| Number of pages | 24 |
| ISSN | 1760-5393 |
| Publication status | Published - 2019 |