Biobanking for rare diseases
[2014-12-17] Rare diseases are uncommon, and often severe, disabling and life threatening. There is a need for research to help these patients get treatment.
But what are the current trends in biobanking for rare diseases? Mats G. Hansson is part of group of researchers that recently published a review on the current trends in biobanking for rare diseases in the Journal of Biorepository Science for Applied Medicine
Here is a video of what Hugh JS Dawkins and Caroline Graham, two of the authors from the Office of Population Health Genomics, Western Australian Department of Health, have to say about the article:
New book thinks about ethics
[2014-12-16] Why would a cancer patient agree to test a drug that might not be effective on their own disease? And are researchers responsible if their research can be used to develop biological weapons? A new book provides some food for thought.
Just the other day, Pär Segerdahl published a book called Thinking about ethics with a collection of texts and reflections from the Ethics Blog. The texts might not provide the answers to all the questions posed above, but they should at least give you some ideas.
In the book, Pär Segerdahl invites you on a journey through some of the issues that the Ethics Blog has dealt with in the recent years. He writes about researchers’ responsibilities, about participating in research and about information and integrity. But he also writes about ethics as such: What is it today, really? In this book you can read about dataprotection and population based biobank studies. But you can also read about apes writing articles and about the risk with knowing the risk. More
Ethical rounds in psychiatric care
[2014-12-01] Is there a way to use ethical rounds to improve the ethical climate in health care? Two outpatient psychiatry clinics in Uppsala have been part of a study to find out if it is possible.
It turns out that the staff appreciated participating in the ethical rounds and saw them as an important forum for discussing ethical questions. According to Marit Silén, who did the intervention as part of her postdoc at CRB, there weren’t any measurable differences in how staff perceive that ethical issue are handled in the workplace - the ethical climate - before and after the intervention.
According to Marit Silén, the project serves to show how difficult it can be to show measurable effects of an intervention that participants feel is both important and worthwhile. The fact that the staff appreciated the ethics rounds shows that there is a need for tools that can catch these questions in the workplace.
“The cases and situations that were discussed during the ethical rounds indicate that staff in outpatient psychiatric care face many ethical considerations that they have to have opportunities to discuss”, says Marit Silén. More
Online research ethics for scientists
[2014-11-24] There is growing concern about research integrity. Scientists need skills to manage the ethical aspects of their research. But they also need formal training in research ethics to meet demands from universities and funding agencies. But how can we make this training available and affordable? CRB has accepted the challenge and are now testing an online training programme that will be available next year.
Stefan Eriksson, Associate Professor of Research Ethics, is currently developing online training for medicine and the life sciences. At the moment, students from Egypt, Singapore, Germany, Italy and Sweden are testing the course to make sure it works for students with different professions, seniority and nationality. The idea is for around 15 students with different backgrounds to meet and discuss and perhaps not only learn from the literature and lectures, but also from each other.
"As a teacher, I think this format is exciting and in some respects the course actually is a lot better than the traditional class room courses we offer. The online format is more interactive than one would think and there are so many exciting web resources available nowadays that can be incorporated or used", Stefan Eriksson says.
But who needs the course and who is it for? According to Stefan Eriksson, the course works for both graduate students and senior researchers and everyone in between and everyone else who needs to be aware of and handle any questions on research ethics and research integrity that could arise in their work. That includes officials and administrators at universities, funding agencies and research ethics committees. More
Consumer genomics: changes on the horizon
[2014-10-28] The market for direct-to-consumer genetic testing has developed over the past decade. And the market for these products keeps changing. The European Parliament recently proposed a new Regulation for in vitro diagnostic (IVD) medical devices. According to a paper in Science by Louiza Kalokairinou, Heidi Carmen Howard and Pascal Borry this could have drastic effects on the genetic test market in the future.
One of the more known companies that offer genetic testing to consumers is the U.S. based 23andMe. About a year ago, the Food and Drug Administration (FDA) put a stop to their "Personal Genome Service": A genome wide test that was marketed without FDA approval. In their marketing, 23andMe claimed that their test provides information on carrier status, health risks, drug response and that the results could help you take steps towards preventing disease. But can it?
The 23andMe case has highlighted concerns over the potential health consequences with the type of testing they are offering. The European Parliament is proposing regulation that could limit the availability of these tests for the consumer market. In a recent article in Science, Louiza Kalokairinou, Heidi Carmen Howard and Pascal Borry, write that the revision of the in vitro diagnostic (IVD) medical device directive that is currently being discussed by the Council of the European Union could have a drastic effect on the market for genetic tests in the future.
Does this new regulation mean researchers have to worry? Heidi C. Howard from the Centre for Research Ethics & Bioethics (CRB) at Uppsala University is one of the authors:
"No, not researchers using non-commercial tests. But, those researchers or companies wanting to commercialize genetic tests in the future and offer them outside of a healthcare institution context should think about the possible repercussions if this proposed Regulation is definitively adopted”, says Heidi C. Howard More
ETHICS BLOG: How do people live with genetic risk?
[2014-12-03] For the doctor, the patient’s disease is a virus infection, a non-functioning kidney, a mutation. The disease is a disorder within the patient’s body.
But for the patient, the disease is not least a disorder of his or her life and of how the body functions in daily life. The disease disrupts the patient’s plans and direction of life. This can be experienced with grief as a loss of what was “one’s life.” Read more