Michele Farisco studies ethical and legal issues surrounding disorders of conciousness
[2013-10-16] 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:
Incidentally discovered diseases - not time for a biobank policy yet
[2013-10-16] Imagine that you allow brain imaging on yourself, for research purpose, and a tumor or a blood vessel with thin walls is incidentally found.
You would most likely want to be informed about these findings, and you would most likely want something do be done.
But what if you donate a blood sample to a biobank, and researchers find a genetic variant that may – or may not – depending on a number of interacting factors that cannot be predicted, result in disease. Would you still want to know?
How incidental findings, complex genetic risk information that is multidimensional and has unclear predictive value should be handled, is discussed in a recent article in the European Journal of Human Genetics The article is written by Jennifer Viberg together with Mats G. Hansson, Sophie Langenskiöld, and Pär Segerdahl.
Read Pär Segerdahl’s blogpost on the subject on The Etics Blog.
Silent agreement enables cheating
[2013-10-02] Leaders, doctors, coaches and sponsors are vital to athletes, especially when transferring attitudes and values.
When we discuss different dimensions of doping, we usually hold the individual solely accountable. Ashkan Atry, PhD Student at the Centre for Research Ethics & Bioethics (CRB) argues that there is a need for a broader social dimension to accountability, if we are to get a more accurate understanding of how doping culture works.
Ashkan Atry argues that the social context, the emotional culture, surrounding an athlete can result in that athlete perceiving doping as both acceptable and expected.
By reviewing doping in a interpersonal context, Ashkan Atry suggests that accountability also include sports physicians, coaches, sponsors and sports journalists.
Ashkan Atry defends his thesis October 11.
Amal Matar studies ethical issues concerning preconception genetic screening
[2013-10-09] The international profile and competence at CRB has been strengthened once again, as Amal Matar joins the team.
Amal Matar is a graduate of Ain Shams University Medical School in Cairo. She holds a Masters of Science in Biotechnology from the American University in Cairo, and completed the Middle EastResearch Ethics Training Initiative Certificate Program in Internal Research Ethics at the University of Maryland in 2012.
Amal Matar worked at the Egyptian Ministry of Health for seven years and has participated in several conferences and workshops as a speaker on research ethics in the Middle East.
In her PhD project Amal Matar will study ethical issues concerning preconception genetic screening, as it raises general concerns of genetic testing and counseling, and the handling of information and risk assessments. It also raises questions surrounding the decision-making process and consent procedures, and concerns about screening programs. A central question to the project is how preconception genetic screening accentuates and influences our familial responsibilities. This project will be pursued in cooperation with The Ethics of Family in Health and Social Care Research Consortium.
On October 14, Amal Matar will hold an open seminar on the subject of research ethics in Egypt.
CRB researchers question revision of the Helsinki Declaration
[2013-09-22] The Declaration of Helsinki is under revision. In the latest issue of Science, Joanna Stjernschantz Forsberg and Yusuke Inoue question a change that could have consequenses for important research on samples and data.
The current version states that consent should be required for all research that uses identifiable tissue samples and data. But there is opening for an important exception: situations where consent would be impossible or impractical to obtain "or would pose a threat to the validity of the research". The revision suggests striking the last part. The authors believe that this is a narrow interpretation of research ethics that can affect a lot of research that is using sample collections and public health data. According to the authors, there is a need for further discussion before accepting this revision.
Read the letter in Science: Beware Side Effects of Research Ethics Revision
Research grants for Anna Höglund
[2013-09-20] Anna Höglund, Senior Lecturer in Nursing ethics at CRB, and Erica Falkenström from Stockholm Centre for Organizational Research (SCORE) have received SEK 3.2 million from AFA Försäkring for the project: Ethical competence in healthcare management.
The project will investigate how ethical competence is expressed and developed in different decision-making processes in healthcare management, and how preconditions for ethical responsibility is thereby created on the management level in healthcare organization.
Anna Höglund has also received a grant of SEK 350 000 from the Faculty of Medicine at the Uppsala University for the project: DNR decisions within oncology and hematology care. Clinical and ethical perspectives. The study is part of Mona Pettersson's PhD project: Developing clearer definitions and clinical guidelines for Do Not Resuscitate (DNR) orders in oncology care, also funded by Cancerfonden.
Daniel Pallarés Domínguez guest researcher
[2013-09-20] Guest Researcher Daniel Pallarés Domínguez joins CRB this autumn. He holds a degree in Humanities from the University Jaume I of Castellón in Spain. He also holds a Pedagogy degree in piano from Conservatory Superior Music de Castellón, and Masters degree in Ethics and Democracy from the University Jaume I of Castellón.
Daniel Pallarés Domínguez is currently a PhD candidate of the Doctoral Program in Ethics and Democracy, with the thesis project:The neuroethics relationships between emotion and reason: Implications for contents of moral dimension, directed by Senior Researcher Elsa González Esteban.
HandsOn: Biobanks on film
[2013-02-01] The BBMRI.se conference HandsOn: Biboanks was held held in Uppsala last September. The conference has now become a six minute video that includes an interview with Joanna Stjernschantz Forsberg.
The conference was a success, with participants from 27 countries. The concept will be repeated by BBMRI-NL somewhere in the Netherlands on 21-22 November this year. You can follow the event on Facebook.