ELSI: Inter-connecting legal frameworks, ethical and social issues
[2015-12-09] BBMRI-ERIC is a joint European platform for biobanking where ELSI service is considered a key asset. Moa Kindström Dahlin, doctor of public law, is the legal expert in the Uppsala team. Here she offers an update.
BBMRI-ERIC will provide a workable research infrastructure to process, share and store human biological samples, including associated medical data. Part of this work is providing a common service for the ethical, legal and societal issues. Our expert team is part of this service with Mats G. Hansson, professor of biomedical ethics, Heidi C. Howard, geneticist and bioethicist, and myself representing public law.
From a legal perspective, we map out and analyze the relevant law: locally and globally. Many of the legal themes relate to data protection and sharing of data: Situations where the individual's right to privacy is challenged by the public interest to promote research and gain new knowledge. Read more
Unsafe harbours for researchers
[2015-12-09] There are many research projects in Europe that have safe harbour as a legal ground for sharing data between the EU and the US. These projects could now be in a peculiar situation as a judgment from the Court of Justice of the European Union concludes that Safe Harbour is not anymore a legally valid ground for sharing data between countries in the EU and the US.
The Court of Justice of the EU has during the last years at several occasions ruled in favour for a stronger protection of personal integrity. This development coincides with the intense negotiations of the EU regarding a new regulation for data protection. In a recent case (C-362/14 Schrems v. Data Protection Commissioner), the Court analyzed the possibilities of transferring personal data from the EU to the US. It ruled that commercial and political interests are less important than the individuals' right to personal integrity. This case concerned the so called Safe Harbour Clauses. Read more
How people value risk information
[2015-12-09] The Swedish SCAPIS study will identify individual risk factors for heart and lung disease. But how do research participants and patients perceive risk? And what do they want to know? Right now, two doctoral students are looking at people's preferences and perceptions.
Risk information is complex. Risk can be high or low, sometimes there is treatment, conditions debut at different ages, are more or less severe, sometimes hereditary, and sometimes fatal. Finding out what people want to know requires more than simple 'yes and no' questions. Whole genome sequencing will become more common in biobank studies, and Jennifer Viberg is on her way to finding out whether research participants want information about incidental findings in genetic and genomic research.
The SCAPIS (Swedish CardioPulmonary bioImage Study) population is large, collecting blood samples and health data from 30,000 men and women between 50 and 64. Hopefully, the results will be implemented in health care. Arvid Puranen is just starting his PhD, looking at how participants perceive risk for disease and how they would like health care professionals to communicate about it. Watch this space for updates!
Families need care when children are dying
[2015-09-21] Children with cancer want honest but hopeful information. But giving appropriate information is difficult and improvements are needed for the sake of the child, the siblings and the parents. In a dissertation from Uppsala University, Li Jalmsell stresses the need for a family perspective and involvement at the end of the child’s life.
Both information and family involvement in care can improve the child’s wellbeing at the end of life. But it is also good for the families. In her interviews with children with cancer, Jalmsell found that children want information about what is going to happen, bad news included. As long as it is presented in a hopeful way. Read more
THE ETHICS BLOG: Ethical questions raised by experiencing another culture
[2015-12-18] When I first moved to Sweden, I was pretty excited to explore a new country and experience Swedish culture and life. In many ways I had not expected the extent of the difference between what I was familiar with and Swedish culture.
I assumed, naively, that I would be in a familiar setting because I had been to other countries. One of my preconceptions was seeing all Western countries as similar, another was believing that European countries shared the same values and culture. But I was proven wrong.
Being brought up in Cairo, Egypt, I was raised in a comparatively restrictive patriarchal family-oriented environment where gender roles are very specific. Although this is by no means uniform and there are exceptions to the rule as well as big variation among Egyptian urban and rural contexts, the overarching tendencies in terms of law and societal expectations are quite gender specific. For example, modesty is expected from women at all times in terms of dress and behavior, even when they are ill or seeking reproductive health advice. Read entire post