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?.

Biobank and registry ethics & law

For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.

Download our biobank and registry report

Biobank and registry ethics & law, report cover

Thinking about ethics

Why would a cancer patient agree to test a drug that might not be effective on their own disease? And are researchers responsible if their research can be used to develop biological weapons? This collection of texts might not provide the answers, but at least give you some food for thought.

Pär Segerdahl invites you on a journey through some of the issues that the Ethics Blog has dealt with in the recent years. He writes about researchers’ responsibilities, about participating in research and about information and integrity. But he also writes about ethics as such: What is it today, really? In this book you can read about data protection and population based biobank studies. But you can also read about apes writing articles and about the risk with knowing the risk.

This book contains a collection of Pär Segerdahl's posts from the Ethics Blog (ISBN: 978-91-506-2433-5). There is also a Swedish version of the book: Tänker om etik

Download "Thinking about ethics"

Thinking about ethics cover