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ELSI Community

The ELSI community aims to increase harmonization of ELSI procedures across health research institutions in the Netherlands. This will make it easier for researchers to comply with various guidelines and laws, without compromising responsible research practices.

The community wants to do this by

  • clarifying the implications of guidelines and laws in the context of health research,
  • facilitating inter-institutional collaboration on ELSI-related practices,
  • assisting researchers with services such as the ELSI Servicedesk,
  • working together or aligning with other organizations to increase ELSI harmonization.

Get involved

Please contact Susanne Rebers if you want to know more about this community and/or if you want to contribute.

Community manager

We want to facilitate research by bringing the ELSI community together.

Susanne Rebers

Relevance

Health researchers are confronted with various ethical, legal, and social implications (ELSI) of their research. Examples are complying with the General Data Protection Regulation, handling incidental findings, and setting up an informed consent procedure. At present, there is a lack of harmonization of ELSI procedures, sometimes leading to inefficiency in health research, especially when it concerns multicenter studies.

Topics for the ELSI community

  • Uniform review of observational health research
  • Interpretation of the General Data Protection Regulation in the context of health research
  • Interpretation of the ‘Wet zeggenschap lichaamsmateriaal’ in the context of health research
  • Safe data linking
  • Artificial intelligence and big data.

Participants

ELSI is a very broad topic and many organizations are active in the field. The ELSI Servicedesk (established under Health-RI and COREON-Federa) helps researchers to find information on ELSI topics, by providing information on its website and by answering questions from researchers, patient advocates, policy makers, and other professionals.

The ELSI Community welcomes participants who are professionally involved in ethical, legal, and social issues around health research. These include researchers, policy makers, DPOs, privacy officers, pathologists, patient representatives, biobank managers, etcetera.

Mode of operation & governance structure

To be determined.

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