Workshops Detail

Use of non-anonymized human genome sequence in research: Science and policy

ESF Exploratory Workshop - MED (formerly EMRC)

Convened by: Michele Garfinkel (DE)

Location: 9-11 December 2014, Heidelberg, Germany

Keywords

DNA sequencing; research policy; rights and duties; basic research; clinical research

Summary

The acquisition of human DNA sequences is technically nearly trivial. A major obstacle to the use of these data to improving human health is the limited amount of available additional data (metadata). Most research protocols have allowed donors to remain anonymous, or to limit access to the metadata. This workshop will focus on the use of non-anonymous genetic data in basic and medical research. The interdisciplinary group will evaluate the current situation and explore scientific and policy options for the distribution of metadata along with the genetic data, and possible consequences. The aim is to explore concrete and novel solutions.

Preliminary programme and Provisional list of participant

(for information purposes only - this meeting is not open to the public)

  • Preliminary programme and List of Participants  

Contacts

Convenors:

Michele Garfinkel
Science Policy Programme
European Molecular Biology Organization (EMBO)
Meyerhofstrasse 1
69117 Heidelberg
Germany
E-Mail

ESF Contact:

ValerieAllspach-KiechelE-Mail
Database officer