Biomedical research does not always require research subjects who are prepared to experimentally try new treatments or diets. Increasingly, research on health and disease is carried out on stored biological samples and personal data in different registries.
Handling human biological material and personal data raises unique ethical issues. People who volunteer as participants in such research are unlikely to be harmed by experimental treatments, but their samples and data are stored for a long time. Samples and data can also be shared by several groups, and be used in different research projects.
One can therefore speak of unique ethical challenges in biobank and registry research. At the Centre for Research Ethics and Bioethics, we have long been working to clarify these challenges and discuss ways to deal with them responsibly. Our work has resulted in numerous publications, often together with biomedical researchers and in international collaborations.
In May 2014, we published an updated compilation of these publications:
The above link will take you to the online version, which also contains further links to the articles that are available online. A printed report can be ordered from firstname.lastname@example.org.
The report contains abstracts of all the publications. What is new is that we now arranged the publications thematically:
- Ethical frameworks and policy
- Regulatory aspects
- Informed consent
- Ethical review
- Integrity concerns
- Genetic testing
- Incidental findings
- Public and patient perceptions
- Rare diseases
- Children & biobanks & genetics
We hope you take a look at the report and find something that interests you!