Ethics lunches for scientists and engineers
[2015-01-26] This spring, the disciplinary domain for science and technology (TekNat), DRI (den reflekterande ingenjören) and UTN (Uppsala teknolog- och naturvetarkår) are hosting a series of lunch seminars focusing on ethics.
Jessica Nihlén Fahlquist from CRB and Per Sandin from SLU will talk about what ethics is, why we should care about nature, the difference between your fellowmen and professionals, and whether sacrificing one person for the good of society is reasonable from an ethical point of view. Note: The seminars will be held in Swedish Read more and register here
Open MIND – access to the latest work in philosophy, cognition and neuroscience
[2015-01-22] An open access collection of the latest work in philosophy, cognitive science and neuroscience is now available online. Kathinka Evers from the Centre for Research Ethics and Bioethics (CRB) is one of the authors.
In her contribution, Kathinka Evers proposes the possibility of being epigenetically proactive. According to her, that means adapting our social structures to benefit, influence and interact with the neuronal architecture of our brains.
The other topics range from the foundations of conscious thought processes to perception, consciousness, and ethics. The Frankfurt-based neurophysiologist Wolf Singer discusses the current status of the search for the neural correlates of consciousness and reviews the methods, including imaging techniques, used in this area of research. Daniel Dennett, one of the leading philosophers of mind, based at Tufts University, explains why consciousness might be an illusion. And Heiko Hecht, an experimental psychologist at Johannes Gutenberg University Mainz, raises new questions about what exactly constitutes an illusion.
Regulating biobank research: new book
[2015-01-13] Biobank research and genomic information are changing the way we look at health and medicine. So how can we regulate it? A recent book published by Springer shows us how the regulatory systems work and raises a critical voice.
Deborah Mascalzoni is Senior Researcher at CRB and the editor of Ethics, Law and Governance of Biobanking that was recently published by Springer. According to her, we can't keep clinical applications and research separate anymore.
But when we start blurring the lines we start challenging existing regulations and ethical frameworks. The book gives an overview of the existing regulatory landscape for biobank research in the Western world. But it also raises some critique of how regulations and ethical frameworks are developed and work. But there is also an underlying ciritique
"There are many questions that still need resolving, for example how researchers should share samples and data across borders. But we also need to figure out some of the basics. Like how we design an ethical informed consent. These are some of the questions that this book addresses", Deborah Mascalzoni explains. Read more
Who calls Swedish Health Care Direct '1177'?
[2015-01-13] For some time now, all Swedish regions have been connected to the telenursing service Swedish Healthcare Direct (SHD), or ‘1177'. But does that mean we have equitable access to health care? Perhaps not. A recent study shows that both language and gender influences who uses the service.
A recent study of authentic calls made to '1177' published in Clinical Nursing Studies shows that the most common caller is a young woman who is fluent in Swedish. According to the authors, it is important that we make sure that telenursing doesn't become a service only for them.
One of the questions they posed was whether men and women are given the same advice. The analysis shows that men, and especially fathers, received more referrals to general practitioners than women. This is interesting, especially since most of the calls about children were made by women. Read more
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
ETHICS BLOG: Rare diseases need international research infrastructure
[2015-01-20] There are a few thousand diseases that you never heard the name of. They affect so few people and have no names in the common language.
These diseases are usually called rare diseases (or orphan diseases). They often (but not always) have genetic origin. They often affect children, are disabling and can even be life-threatening, and in many cases organ systems in the body degenerate.
Because the diseases are rare, they are difficult for doctors to diagnose. Even if one manages to make a diagnosis, treatments are often lacking. Read more