Global research infrastructure for biobanking
[2015-09-28] The University of the Western Cape in South Africa just hosted the first meeting of B3Africa – a Horizon2020 CSA Action to bridge European and African biobanking and biomedical research.
The partnership has two strategic aims: One is to create a harmonised ethical and legal framework between European and African partner institution. The second is to provide an "out-of-the-box" informatics solution for data management, processing and sharing that works with limited Internet access.
Jane Reichel is Professor of Administrative Law at Uppsala University and leads the ethical and legal work. According to her, a shared ethical and legal framework is necessary if the informatics platform is to fill its purpose and allow data and bio-resources to be shared between countries and continents. Read more
Renewed European effort to agree on data protection
[2015-09-28] The European Data Protection Regulation keeps moving through the administrative and legislative process. This summer, The Council, The European Parliament and the European Commission started the 'trilogue' negotiations. Here, Anna-Sara Lind gives her comments on the process.
Right now, intense efforts are made to agree on a common view on data protection in the European Union. In accordance with the legislative process of the European Union, the three institutions have – at different times – over the last years produced one document each of their version of how a regulation should be written. It is noteworthy that the three versions differ rather heavily when it comes to matters having an impact on biobank research. When comparing the documents from the three institutions, it is clear that the Council is more generous towards research. The European Parliament on the other hand is striving for a stronger protection for personal integrity in all fields, even research. Read more
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
Bioethics scholars recommend broad consent
[2015-08-27] Researchers ask for different types of consent when they collect samples for future research. This creates confusion about what research is permitted. But it also causes unintentional constraints on future research and sometimes leads research proceeding without consent.
An international working group of bioethics scholars recently published a target article in the American Journal of Bioethics. They come to the conclusion that Broad Consent is the preferred solution for balancing patient interest related both to protection of privacy, respect for autonomy and the need to develop and improve medical treatment. The article is the outcome of a workshop of the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens arranged by the US National Institutes of Health (NIH).
Mats G. Hansson is one of the scholars behind the article. He has followed the discussions on informed consent for the better part of his career and recently wrote about a model for broad consent called trust based consent for our newsletter Biobank Perspectives: Trust based consent looks promising
Patients don’t understand the purpose of clinical drug trials
[2015-08-17] Clinical trials are an important part of cancer research. Future patients depend on the severely ill to test drugs to improve treatment. But in her dissertation from Uppsala University, Tove Godskesen shows that some of these patients have a limited understanding of the purpose of the studies they enroll in.
On August 28, Tove Godskesen will defend her PhD thesis where she has looked at the reasons why cancer patients participate in clinical drug trials and whether they understand the information they have received. She shows that most patients have been adequately informed, are satisfied with their participation and able to recommend others to enroll in studies. But a small group of the patients, who also are the most ill, that had trouble understanding what participation in a drug trial entails. According to Tove Godskesen this is an ethical dilemma for clinical research that risks diluting the practice of informed consent. Read more
THE ETHICS BLOG: Dissertation on palliative care of children with cancer
[2015-09-21] Approximately every fifth child who gets cancer in Sweden dies from their disease. In her dissertation work at CRB, Li Jalmsell studied the care of these children at the end of their life from both the child’s and the parents’ and siblings’ perspectives.
Jalmsell also did surveys with parents and siblings who lost a child/sibling, and interviewed children with cancer. The children themselves emphasize in the interviews that they want honest information, even when it is bad. But they also want the conversations to be hopeful and contain a plan ahead; and they want to be informed simultaneously with the parents (not after the parents). Read the rest of the post