BBMRI.se - Biobanking and Molecular Resource Infrastructure of Sweden : Ethical and legal aspects

BBMRI.se was a national effort for efficient and automated collection of biological material. We were responsible for WP 7 that 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, existing laws on personal data and public access to information and secrecy, exert an influence on what can and can’t be done with biobanks and data. A major obstacle for researchers is that laws in part overlap, 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

CRB's role in BBMRI.se - ELSI service

Our commitment in BBMRI.se included providing ELSI service to the research community. We are part of a larger network of people with expertise in different legal and ethical fields.

ELSI Services included:

  • 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.
  • Investigations of ethical and legal issues associated with biobank and registry-based research. The results are published in reports and peer-reviewed publications.
  • Dissemination of research in bioethics and law to the research community through our 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 pa 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 both in English and Swedish).

Researchers

The ELSI Service was led by Mats G. Hansson at the Centre for Research Ethics and Bioethics (CRB) at Uppsala University. In March 2010 two collaborators were recruited to work with the ethical issues at hand:  Kathinka Evers,  Associate professor of theoretical philosophy and Joanna Forsberg, former PhD student and MD, both from CRB.

In September 2011, legal competence was added to the group: Jane Reichel, Associate  professor of  administrative law, and Anna-Sara Lind, Associate professor of public law, both from the Department of Law at Uppsala university and were tied part-time to CRB to work with WP7.

In October 2011 Pär Segerdahl, Associate professor of theoretical philosophy was added to the team to work with research communication. 

In April 2012, Jennifer Viberg joined the group with her PhD project: How should incidental findings in biobank research and genome sequencing studies be handled?.

Biobanks- och registerforskning: Etik och juridik

Vi har ägnat många år åt konstruktiv vägledning kring hanteringen av etiska och juridiska aspekter av forskning på mänskligt vävnadsmaterial och persondata. Vi samarbetar med biomedicinare och publicerar våra resultat i vetenskapliga tidskrifter.

Vi har sammanställt våra publikationer (med abstracts) i en rapport. Rapporten är på engelska och uppdaterades i juni 2016.

Ladda ner vårt rapport om biobanker och register

Biobank and registry ethics & law, rapportomslag

Tänker om etik

Varför ställer cancerpatienter upp och testar läkemedel som kanske inte är effektiva på deras egen sjukdom? Och vilket ansvar har forskare om resultat en kan användas till utveckling av biologiska vapen? Här har du en samling texter som kanske inte ger dig svaren, men lite underlag för diskussion. De handlar om forskning och sjukvård. Om det lätta och om det svåra.

Pär Segerdahl tar med dig på en resa genom några av de ämnen som behandlats på Etikbloggen de senaste åren. Han skriver om forskarnas ansvar, om hur det är att delta i forskning och om information och integritetsskydd. Men han skriver också om etik: Vad är det egentligen idag. Här kan du bland annat följa LifeGenedebatten om hur Datainspektionen stängde ner en stor biobank som skapat som en infrastruktur för forskning. Men du kan också läsa om hur man hittar borttappade nycklar och risken med att veta risken.

I den här boken hittar du ett urval av Pär Segerdahls poster från Etikbloggen. ISBN: 978-91-506-2434-2. Boken finns också på engelska: Thinking about Ethics

Ladda ner "Tänker om etik"

Tänker om etik omslag