Ethical, legal, and social implications (ELSI)

BioSHaRE has assembled a team of experts in ethical, legal and social implications (ELSI) to deal specifically with the ELSI issues arising in the BioSHaRE project. This expert team has paid particular attention to the international sharing of samples and data, geo-referencing and use of environmental risk and personal life-style data, and societal impact and stakeholders engagement.

The result is a comprehensive set of guidelines to assist researchers with data use, sharing, and access within large international collaborative frameworks. Chief among these is the Framework for responsible sharing of genomic and health-related data.

 

 

Tool Description Website Demo
Ethical, Legal and Social Implications
ELSI data and sample sharing tools 1. Legal requirements for sharing of data and samples across biobanks based in Germany, Finland, the Netherlands, Norway and in the UK https://www.bioshare.eu/content/deliverables-0
  2. Data access policies of different biobanks in Germany, Finland,
the Netherlands, Norway and in the UK
 
  3. ELSI issues and solutions related to federated analysis using
DataSHIELD

Wallace at al. 2014

Budin-Ljosne et al. 2014

 
Framework for responsible sharing of genomic
and health-related data
  http://www.thehugojournal.com/
ELSI guidance on geo-referencing and use of
environmental risk and personal life-style data
in European biobanks
   
ECOUTER Employing COnceptUal schema for governance, policy and Translational Engagement in Research https://wikis.bris.ac.uk/display/ECOUT/