EU data protection legislation threatens rare disease research
[2013-04-23] Research on rare diseases requires international collaboration and movement of samples and data across national borders. Currently the EU is discussing new data protection legislation that would make this type of research difficult. In the latest issue of Nature Review Genetics, Deborah Mascalzoni et al writes that the EU needs to make an exception for scientific research. Read more
Deborah Mascalzoni joins our team!
[2013-04-23] The latest addition to our group is Deborah Mascalzoni who joined our team of researchers in April this year.
Deborah Mascalzoni adds to our competence on the ethical issues related to biobank and registry research and brings new expertise on rare diseases. A perfect fit for CRB's role in the 7th framework project RD-Connect with a focus on rare diseases.
EU project will increase researcher access to biobanks
[2013-04-23] All of us stand to benefit from large European health studies, but it is not always easy for researchers to collaborate across national borders. To help enable collaboration, the international EU-funded project BBMRI-LPC will spend the next four years working to increase researchers’ access to samples and data. Researchers at CRB have a key role in the project. Read more
The Ethics Blog >> Morality as a problem
[2013-04-09] Friedrich Nietzsche made this enigmatic remark about moral philosophy:
“In all ‘science of morals’ so far one thing was lacking, strange as it may sound: the problem of morality itself; what was lacking was any suspicion that there was something problematic here.”
What did Nietzsche mean? More
Read all of Pär Segerdahl's post on the ethics blog >
Ethical challenges of human brain simulation
[2013-01-28] One of the greatest challenges of modern science is understanding the human brain. Uppsala University’s Centre for Research Ethics & Bioethics (CRB) is part of the European Commission flagship initiative to simulate the human brain and will look at the philosophical and ethical implications of this. Read more
HandsOn: Biobanks on film
[2013-02-01] The BBMRI.se conference HandsOn: Biboanks was held held in Uppsala last September. The conference has now become a six minute video that includes an interview with Joanna Stjernschantz Forsberg.
The conference was a success, with participants from 27 countries. The concept will be repeated by BBMRI-NL somewhere in the Netherlands on 21-22 November this year. You can follow the event on Facebook.