Colloquium research group Community Genetics
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Post-mortem use of genetic and health-related data for research: European policies and perspectives- Marieke Bak MSc MA PhD(c) (Amsterdam UMC, Location AMC)
Due to the rise of longitudinal studies and long-term biobanking projects, deceased persons are making a growing contribution to the pool of genetic and health-related data used for research. There is, however, a lack of ethical and legal guidance regarding this topic. For instance, the EU General Data Protection Regulation (GDPR) does not directly apply to the dead. By presenting findings from literature review and empirical research within a European consortium studying sudden cardiac death, Marieke Bak will discuss ethical and legal aspects of post-mortem use of data for research. This includes the topic of returning individual genetic research findings to relatives of the deceased.
More information can be found in:
Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review. - Bak MAR, Ploem MC, Ateşyürek H, Blom MT, Tan HL, Willems DL..
Eur J Hum Genet. 2020 Apr;28(4):403-416. doi: 10.1038/s41431-019-0503-5. Epub 2019 Sep 16. Review.
If connections work well, we hope Florence Fellmann from France will join us. Her reaction on the article by Marieke can be found here:
ESHG PPPC Comments on postmortem use of genetic data for research purposes. - Fellmann F, Rial-Sebbag E, Patch C, Hentze S, Stefansdottir V, Mendes Á, van El CG, Cornel MC, Forzano F; Public and Professional Committee (PPPC) of the European Society of Human Genetics (ESHG).
Eur J Hum Genet. 2020 Feb;28(2):144-146. doi: 10.1038/s41431-019-0525-z .
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More information Carla van El : cg.vanel@amsterdamumc.nl