Science communication in "knowledge landscapes"
[2014-03-06] Researchers and scientists need to communicate new knowledge to society. Previously, the discussion on this communication process has focused on dialoge between scientists on the one hand, and policy makers and the public on the other. In a recent paper, Anna Lydia Svalastog togehter with Joachim Allgaier, Lucia Martinelli and Srecko Gajovic suggest that today, researchers, PR consultants, interest groups, policy makers and lay people interact on the Internet, creating "knowledge landscapes" where knowledge is interrelated, framed and shaped.
In the article, they focus specifically on "bio objects" (such as stem cells and chimeras) and science communicaiton in relation to citizenship and personalized medicine.
Read article in the Croatian Medical Journal
Karl Sallin will study pervasive refusal syndrome as a disorder of conciousness
[2014-01-24] Despite severe symptoms apparently affecting consciousness, pervasive refusal syndrome has received little attention from neuroscience. Dr Karl Sallin has initiated a collaboration between clinicians and neuroscientists in order to study PRS as a disorder of consciousness.
Karl Sallin is a paediatric resident at Astrid Lindgren Children’s Hospital, Karolinska University Hospital. He is on the hospital’s Ethics committee and he is also a member of the Swedish Society of Medicine’s Ethics committee. Karl Sallin holds a degree in Philosophy from the University of Cambridge where his main foci were on the philosophy of mind, language and mathematics. In his clinical work Karl Sallin has come across children suffering from pervasive refusal syndrome (PRS).
Consciousness is with few exceptions considered a phenomenon of the brain and The Human Brain Project endeavours to create a simulation of the human brain. A traditional philosophical line of argument stresses that giving an account of the qualitative aspect of consciousness – evades a solution within natural science. Can modern neuroscience avoid this problem and still contribute to the understanding of consciousness?
In his work, Dr Karl Sallin is sponsored by the Human Brain Project and supervised by Professor Kathinka Evers at CRB and Associate Professor Predrag Petrovic at the Karolinska Institute. Senior Professor Hugo Lagercrantz acts as Karl Sallin’s mentor.
Pretend play can facilitate treatment and improve quality of life for children with cancer
[2014-01-15 ] In health care, and particularly in children’s cancer care, it is difficult for children to gain a sense of understanding , control and involvement . This may cause fear and discomfort.
Pretend play is crucial to children's development, understanding, learning and wellbeing. When a child is exposed to various traumas in life, such as extensive medical treatment and hospital care, the importance of pretend play may prove to be central for the relief of frustration and anxiety.
An international collaboration involving experienced researchers, clinicians and ethics researchers, will examine if pretend play have a positive effect on children aged 3-10 years, and their integration in the treatment and decision-making processes regarding their cancer.
The initial study will involve interviews with sick children and their parents, in order to identify what it is that causes frustration and fear.
Subsequently ten children who have been diagnosed with cancer will be given an opportunity to participate in a pretend play intervention, with eight individual sessions, together with a play facilitator.
A control group of ten children will be given an opportunity to play in a more conventional manner, with puzzles and colouring books. The aim is to measure and compare the propensity for anxiety reactions and perceived quality of life, with the aid of psychological measuring instruments.
- To help children with cancer aqquire a sense of understanding and control is ethically imperative, Mats Hansson, Director of CRB, comments.
The research project is a collaboration between Uppsala University, Uppsala University Hospital, Case Western Reserve University in Cleveland and the University of Hamburg .
Too quiet on the ethical and social implications of genetic testing
[2013-12-16] 99 US dollars will buy you a genetic test and information about what diseases you are at risk of developing in the future. But there is not enough discussion on the ethical and social implications of genetic testing.
After a vigorous marketing campaign from the company 23and Me, the Food and Drug Administration (FDA) recently demanded that the marketing of genetic tests should stop. The tests are not considered reliable, and there are significant risks to be considered.
Genetic testing will undoubtedly play an increasingly important role in the future. Genetic risk information is very complex and it is yet unclear how that type of information can and will be managed wisely.
In an article, published in Dagens Medicin, Mats G. Hansson , Professor of Biomedical Ethics and Jan-Eric Litton, professor of Biomedical Computing, calls for a broader discussion about the ethical and social aspects of genetic testing.
They also note that there is no scientific evidence nor any knowledge of how people actually react to or handle genetic risk information.
CRB has recently been granted funds for an extensive research program on the ethics of genetic risk information . The program is led by Mats G. Hansson.
See marketing video from 23andMe here.
Read Pär Segerdahl's post in the Ethics Blog.
Michele Farisco studies ethical and legal issues surrounding disorders of conciousness
[2013-12-12] CRB proudly adds Michele Farisco to its international and multidisciplinary profile. Michele Farisco will study ethical and legal issues emerging from neuroscientific investigations of disorders of consciousness.
Michele Farisco holds a degree in Philosophy from University of Naples, L'Orientale in 2003, a PhD in Ethics and Anthropology, History and Foundation from University of Lecce in 2008 and a Master degree in Biolaw from the University of Rome Lumsa in 2009.
He spent an exchange grant from the European Neuroscience and Society Network within the European Science Foundation joining the Coma Science Group of the University of Liège in Belgium.
Michele Farisco has been teaching moral philosophy, anthropology and bioethics at the Faculty of Theology of Naples and was a consultant of the Italian National Institute of Health for a project about the nosography of disorders of consciousness. He is the head of the Science and society research unit of Biogem Genetic Research Centre in Ariano Irpino (Italy).
He is the author of three books and several articles about posthuman philosophy and philosophical, ethical and legal implications of genetics and neuroscience.
In his PhD project, titled Neuroscience of Disorders of Consciousness: from Laboratory to Clinics, Michele Farisco will study the ethical and legal issues emerging from neuroscientific investigation of disorders of conciousness and related technological applications. His project, under the supervision of Kathinka Evers and Steven Laureys, will be developed within the European Human Brain Project.
CRB coordinates unique research collaboration on genetic risk information
[2013-10-16] The Swedish Foundation for Humanities and Social Sciences has granted CRB and research partners SEK 35,9 million to conduct research on how to manage and handle genetic risk information.
There is an ongoing massive production of genetic risk information by academic- and industry associated scientists. However, health care systems as well as legislators and society at large are unprepared for the management of complex risk information in a manner that recognises values, beliefs and psychological needs of individuals and families.
The genetic information technologies transcend national borders and give rise to hopes of individualized health advice, optimal treatment and prevention of disease. But the technology also raises questions about stigmatisation of individuals who are carriers of genetic risk. There is also a need to further explore if providing risk information to individuals may give rise to unrealistic expectations, if it may induce confusion and anxiety, harm privacy, and possibly lead to a neglect of social risk factors related to disease.
The Centre for Research Ethics & Bioethics will coordinate this unique and multidisciplinary research collaboration, linking strong research centres in Europe. Within the research project philosophical, historical and sociocultural analysis will be linked to empirical studies of risk perception, which eventually will provide professionals, citizens, patients and legislators with a thorough support for further ethical analysis. A series of workshops and an end user conference will contribute to methodological development, cross disciplinary collaboration and dissemination.
More information on the project here.
Participants in the research project are: