Information and law in transition
[2015-06-02] New information and communication technologies have created exciting new possibilities for connecting individuals across borders and continents but also significant legal, ethical and political concerns.
A number of prominent scholars from Europe and North America analyze the developments of information and law from their respective perspectives in the new book Information and Law in Transition. New information and communication technologies have made it possible to create large registries and databases with the potential to lead to effective cross-border law enforcement, foster important new research as well as unwarranted mapping of individual persons' private life. At the same time, new needs of regulating privacy and Internet never cease to emerge. The process of negotiating a Data protection regulation in the European Union is one example illustrating this. Read more
Trust based consent looks promising
[2015-06-02] Finding a model for informed consent that protects the integrity and interests of participants, future patients and researchers isn't easy. Recently, a group in Milano tested a trust based consent that I think looks promising.
The European Institute of Oncology (IEO) in Milano has designed and tested a new information and consent procedure for its tissue bank, the IEO Biobank and Biomolecular Resource Infrastructure (IBBRI).
This new model of trust-based consent is a modified version of broad consent that has proven successful both for information to participants and for providing a useful resource for important research. Read more
Swedish research database legislation: update
[2015-06-02] Research databases like the Swedish Life Gene project have proven problematic and the Swedish Government has tried to find solutions for collections of samples and data for 'future research', a purpose that is not considered specific enough by the Data Inspection Board.
In 2013, a temporary Act on research registries known as the "LifeGene Act" was enacted in order to legalize research conducted on registries that higher education institutions are responsible for. The act will be valid until 31 December 2015.
This spring, the Act was reviewed and analysed. On March 24 this year, the Ministry of Education and Research published a memo where they suggested that the temporary Act should be valid until 31 December 2017. Read more
Genetic risk: do people want to know?
[2015-06-02] Biobank studies and genetic research aim at finding out the relationship between our genetic code and our diseases. Sometimes researchers find unexpected information about a participant. Asking people if they want this kind of risk information returned to them seems like a good idea. But is it fair to leave them to make that decision?
Ethicists, regulations and researchers have struggled with whether or not to disclose incidental findings. There has been a shift in the discussion on incidental findings. In recent years, the focus has shifted from discussing what kind of information researchers should give participants, to asking participants what they want to know. In a recent paper in Bioethics, researchers from the Centre for Research Ethics & Bioethics (CRB) claim that shifting the responsibility from researcher to participant comes with a number of problems. Read more
ETIKBLOGGEN: All you need is law? The ethics of legal scholarship
[2015-06-09] Working as a lawyer in a multidisciplinary centre for research ethics and bioethics, as I do, often brings up to date questions regarding the relationship between law and ethics. What kind of ethical competence does academic lawyers need, and what kind of ethical challenges do we face? I will try to address some aspects of these challenges.
That does not mean that I automatically like all regulations, it is just that I cannot see a better way to run the world, but through a common system of legal norms. Believing in law means that I accept living in a different universe. I know the non-lawyers cannot always see my universe, but I see it clearly, and I believe in it. You’ll have to trust me – and all other lawyers – through training and education, we see this parallel universe and believe in it. Read more