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
Brain simulation raises questions
[2014-10-22] What does it mean to simulate the human brain? Why is it important to do so? And is it even possible to simulate the brain separately from the body it exists in? These questions are discussed in a new paper published in the scientific journal Neuron today.
Simulating the brain means modeling it on a computer. But in real life, brains don’t exist in isolation. The brain is a complex and adaptive system that is seated within our bodies and entangled with all the other adaptive systems inside us that together make up a whole person. And the fact that the brain is a brain inside our bodies is something we can’t ignore when we attempt to simulate it realistically. Today, two Human Brain Project (HBP) researchers, Kathinka Evers, philosopher at the Centre for Research Ethics and Bioethics at Uppsala University and Yadin Dudai, neuroscientist at the Weizmann Institute of Science, publish a paper in Neuron that discusses the questions raised by brain simulations within and beyond the EU flagship project HBP.For many scientists, understanding means being able to create a mental model that allows them to predict how a system would behave under different conditions. For the brain sciences, this type of understanding is currently only possible for a limited number of basic functions. In the article, Kathinka Evers and Yadin Dudal discuss the goal of simulation. In broad terms it has to do with understanding. But what does understanding mean in neuroscience? More
Research on patients with disorders of consciousness
[2014-10-13] There are a number of disorders of consciousness where patients are unable to communicate. There is a need for research on these patients to improve treatment and diagnosis. But since these patients don't talk in the common sense of the word, there are a number of ethical and legal problems attached to this research.
Michele Farisco, Kathinka Evers and Carlo Petrini recently published a paper where they discuss the ethical and legal dimensions of biomedical research on patients with disorders of consciousness. According to them, informed consent to experimental treatments is a particularly challenging issue for these patients: Both from an ethical and legal point of view.
If we are to improve care and the clinical conditions for these patients, we need research. But all research is not experimental medical research. Observational studies of non-communicative patients also raise the issue of informed consent. In the second part of the article, the authors present an informed consent form for studies through video-recording of patients who are unable to communicate their own consent. The form has been designed within a project on methods of behavioral analysis of individuals in coma or vegetative state run by the Italian National Institute of Health. More
Registration open! Epigenetics as the meeting point between nature and nurture
We welcome you to a multidisciplinary workshop on Epigenetics to explore the potential for multidisciplinary research initiatives
Sessions on the early development phase, nutrition, pharmacology, mental disorders and the social contexts
When: 19-20 March 2015, Uppsala, Sweden.
Where: Uppsala University main building
Speakers: Marco Boks, Eero Castren Jean-Pierre Changeux, Robert Erikson, Kathinka Evers, Mats G. Hansson, Christina Hultman, Eva Jablonka, Juha Kere, Hugo Lagercrantz, L.H. Lumey, Christopher Murgatroyd, Helen Neville, Gísli Pálsson, Elisabeth Radford, Bart Rutten, Dietmar Spengler, David St Clair and Denny Vågerö
Morally responsible risk communication
[2014-09-30] Risk communication has to be effective. But it also needs ethical legitimacy. This has become particularly clear after the Fukushima nuclear disaster when three of the reactors suffered meltdowns. But how can we meet these demands?
In an article that was recently published in the Journal of Risk Research, Jessica Nihlén Fahlquist and Sabine Roeser suggest a three-level framework for morally responsible risk communication: A legitimate procedure, an ethically justified risk message and evaluation of the effects of both message and procedure.
According to them, emotions also have an important part to play in risk communication. When it comes to addressing and explicating moral values, sympathy, empathy and feelings of responsibility have leading roles.
On October 7, Sabine Roeser will hold an open lecture on fear, care and hope: Moral emotions and risk analysis at Uppsala University. Welcome!
Read article in the Journal of Risk Research: Nuclear energy, responsible risk communication and moral emotions: a three level framework
ETHICS BLOG: How can the brain be computer simulated?
[2014-10-29] A computer simulated human brain – that undoubtedly sounds like science fiction. But the EU flagship project, the Human Brain Project, actually has computer simulation of the brain as an objective.
What will be accomplished during the ten years that the project is financed will presumably be simulations of more limited brain functions (often in the mouse brain). But the proud objective to simulate the human brain has now been formulated in a serious research project.
But what does “computer simulation of the brain” mean? Read more