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Nationella Biobanksrådet

ELSI HELPDESK

Biobanks, ethics & law – new helpdesk fall 2018

Centre for Research Ethics & Bioethics (CRB) is responsible for the ELSI help desk launched by Biobank Sweden during the fall of 2018. The ELSI help desk deals with pressing ethical and legal questions rising from biobank related research.

There are a number of ethical and legal aspects of research conducted on human tissue samples that need to be addressed in a professional and constructive manner. The proposed new act on biobanks, new and existing laws on personal data and public access to information and secrecy, exert an influence on what can and cannot be done with biobanks and data. A major obstacle for researchers is that the laws overlap in part, but provide slightly different answers to some questions and fail to address certain aspects of research activities. This poses major challenges for the scientific community in their strife to produce knowledge that can benefit patients.

The ELSI help desk will offer advice to researchers on the ethics and law of biobank research. Centre for Research Ethics & Bioethics is part of a larger network of people with expertise in different legal and ethical fields.

ELSI help desk will provide:

  • Advice on specific ethical issues for researchers, for example how to interpret Swedish legislation on data protection or ethical review in relation to specific projects.
  • Access to a knowledge base with guidelines, templates for material transfer agreements, informed consent and codes of conduct.
  • Investigations of ethical and legal issues associated with biobank and registry-based research. Results are published in reports and peer-reviewed publications.
  • Dissemination of research in bioethics and law to the research community through Biobank Perspectives newsletter and the Ethics Blog.
  • Training on ELSI issues and research ethics.
  • Participation in research projects where we can assume responsibility for ELSI work packages and be part of an integrated approach.
  • Providing preparatory material to help guide universities, research consortia and research funders in their dialogue with governmental agencies on referrals or policy documents.
  • Exchange of information and discussion with policy makers and the public, for example through the Ethics Blog (available in both English and Swedish).

Contacts:

Camilla Östergren or Mats G. Hansson at the Centre for Research Ethics & Bioethics.

 

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