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
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
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
THE ETHICS BLOG: Ethics research keeps ethical practices alive (new dissertation)
[2015-08-25] I have in two posts complained about a tendency of ethical practices to begin to idle, as if they were ends in themselves.
Like when Steven Pinker recently wrote that the primary moral goal for bioethics today should be: Get out of the way!But there is a way to go: self-scrutinizing ethics research.
Bioethics is often misunderstood as merely a fixed and finished framework of ethical rules, principles and review systems: as a cumbersome bureaucracy. I guess that is how Pinker understands it. Read entire post >