Mind the Risk: People
Uppsala University: Centre for Research and Ethics and Bioethics (CRB)
Mats G. Hansson is Professor of Biomedical Ethics and Director of CRB. He received his first degree in biology 1974 and a doctoral degree in ethics 1991. He has over 100 original publications including three monographs and has led several multi-disciplinary projects in bioethics. He co-ordinates Mind the Risk.
Heidi Carmen Howard is senior researcher at CRB with a PhD in neurogenetics and an MA in bioethics. Heidi Carmen Howard is also an invited scholar at the Centre of Genomics and Policy at McGill University (Montréal, Canada) and a member of the Public and Professional Policy Committee of the European Society of Human Genetics.
Ulrik Kihlbom is senior lecturer in medical ethics at the Centre for Research Ethics & Bioethics. He teaches ethics to medical students and is responsible for an advanced level course on public health ethics. His research interests cover bioethics in general, the methodology of applied ethics and metaethics.
Sofia Lavén is a medical doctor and PhD student at CRB. She will not be funded by the program but her project on cardiovascular risk information in primary health care brings additional competence.
Jessica Nihlén Fahlquist is a senior lecturer at CRB. She also works as a postdoctoral researcher at the Philosophy Section at Delft University of Technology in the Netherlands. Jessica's research focuses on applied ethics, and she has a particular interest in notions of moral responsibility.
Jennifer Viberg Johansson is is a licensed Prosthetist and Orthotist and Post Doc researcher at CRB. She is involved in the IMI-funded BTCure project on Rheumatoid Arthritis and BBMRI.se. She finished her PhD studies in September 2018. Her PhD project investigated the ethical issues concerning disclosure of incidental (or secondary) findings to research participants in genetic research.
Karin Schölin Bywall is a PhD student at CRB. Her project aims to investigate methodologies to elicit informed patient preferences regarding the benefits and risks of drugs, from development through the entire cycle, to inform the decision-making process of regulators and HTA bodies.
Georg-August-Universität, Göttingen: The Department of Medical Ethics and History of Medicine
Silke Schicktanz is full professor of cultural studies and ethics of biomedicine. She focuses in her research on the mutual relationship of cultural and ethical discourses of biomedicine. This includes the socio-empirical and theoretical comparison of localised discourses in bioethics, particularly on genetic testing.
Dr. Sabine Wöhlke Sabine Wöhlke is Postdoctoral Researcher at the Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen. Since 2015 she is the project coordinator of the Göttingen subproject. Her main interests are ethical and cultural aspects of genetics, eg. predictive genetic testing as well as qualitative socio-empirical research in the field of patient-physician communication and shared decision making. She has cultural comparative experience and is currently working on several comparative studies in the MTR group. She has published on the complexity of family decision making processes in medicine, physicians’ communication patterns for motivating cancer patients to biomarker research and on cultural differences in several medical ethical fields.
Zümrüt Alpinar Sencan works as a postdoctoral research fellow at the Department of Medical Ethics and History of Medicine since January 2018. She has a background in Philosophy and holds a doctoral degree in Biomedical Ethics. Her current research focuses on Stakeholders' attitudes towards prodromal dementia diagnosis in a cross-cultural comparison. Recently she has worked on the perspectives of the affected and laypersons on prognosis and early diagnosis. Her research also addresses Patient Organizations (as Stakeholders) on the European level and their engagement to make strategic decisions about allocation and balancing of competing values and interests, and how to deal with an increasing amount of genetic risk information in the health care and medical research sectors. Her previous works focused on dignity in organ markets debate, organ transplantation, justice and rights in health care and methodology in ethics and bioethics.
Manuel Schaper is a researcher at the Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen. He has a background in cultural anthropology, gender studies and social and economic psychology. Initially, he joined the project as a research assistant in 2015. His current work is about ethical aspects of direct-to-consumer genetic testing. In his work, he gives special focus on ethical aspects of communication in context of genetic testing. As member of the project, he is engaging in the research activities of the Göttingen research group within the MTR project such as the current studies with a cross-cultural perspective.
Carolin Rauter is a medical student of the 8th semester at the Georg-August University in Göttingen. She is a doctoral student and a student assistant in the MTR project. Her current work focuses on ethical perspectives of patient organisations on genetic testing, Big Data and risk communication with relevance to the diseases they focus on.
Julia Inthorn holds a master in Mathematics and a doctoral degree in Philosophy. Her research interests are in the field of genetic testing and genetic screening, intercultural bioethics and empirical ethics. Julia Inthorn holds a master in Mathematics and a doctoral degree in Philosophy. She has also worked and published on ethical issues at the end of life, power and autonomy and biopolitics. She has also worked and published on ethical issues at the end of life, power and autonomy and biopolitics.
Julia Perry is a research assistant with a background in medical sociology and gender studies. In her research she focuses on medical knowledge of lay people and the physician-patient communication process.
The Interdisciplinary Research Center on Decision Making Processes in Milano:
Gabriella Pravettoni is full professor of Cognitive Science at the University of Milan and Director of IRIDe. Her main interests include the study of cognitive processes, decision-making, patient empowerment and health psychology.
Ilaria Cutica graduated in Psychology at the University of Turin in 1997; in 2001 she got a PhD in Cognitive Science at the same University with a research on the neuropragmatics of communication. In 2005 she got a Master in Cognitive Psychotherapy, from the Italian Society for Behavior and Cognitive Therapy. She has been assistant professor in General Psychology from 2005 to 2011 at the Faculty of Psychology of the University of Turin; since 2011 she is assistant professor in General Psychology at the University of Milan, where she teaches courses of Cognitive Psychology. Her research interests are concerned with pragmatics of communication in healthy adults, in brain injured patients and in deaf individuals, and with communication in medical settings, patients empowerment and medical decision making
Alessandra Gorini, PhD, has a research positionat the University of Milan where she teaches Cognitive Psychology and related disciplines and conducts researches about the decision-making processes in medical environments.
Serena Oliveri, PhD, is a Post-Doc researcher in Cognitive Psychology and Decision-Making processes at theUniversity of Milan and a member of the Applied Research Unit for Cognitive and Psychological Science at the European Institute of Oncology (IEO). Her research interests focus on medical decision making, risk analysis related to genetic information, effects on cognitive functions of cancer treatments and cognitive enhancement. She the is author of several scientific papers published on indexed peer-reviewed international journals.
University of Manchester: The Centre for Health Economics, Institute of Population Health
Katherine Payne is Professor of Health Economics. She was awarded a personal chair in health economics in August 2010. She is also a qualified pharmacist and a member of an NICE appraisal committee. Professor Katherine Payne has over 100 publications, over 16 years experience as an academic health economist and an international reputation for the economics of genetic technologies and services.
Caroline Vass holds a BSc in Economics and an MSc in Health Economics from the University of Birmingham. She is expected to complete her PhD from the University of Manchester in September 2014. Caroline’s PhD involves investigating the framing of risk attributes in DCEs.
Andrea Manca is a Professor of Health Economics in the Team for Economic Evaluation and Health Technology Assessment, part of the Centre for Health Economics at the University of York. Andrea holds an MSc in Health Economics (1998) and a PhD in Economics (2005), both awarded by the University of York.
Fiona Ulph is lecturer in Qualitative Methods at the University of Manchester. She holds a PhD is Psychology from the University of Nottingham. Her research interests include how people assimilate genetic risk information into their lives, the communication of genetic information to parents and children following newborn screening and how new screening technologies are understood by the public.
University of Birmingham & Sandwell & West Birmingham Hospitals NHS Trust
Karim Raza, BMBCh, FRCP, PhD is a Reader in Clinical Rheumatology and Honorary Consultant Rheumatologist at the University of Birmingham and Sandwell and West Birmingham Hospitals NHS Trust. His research interests relate to the earliest phases of rheumatoid arthritis including approaches to the prediction of outcome and strategies to improve access to care for patients with early arthritis. He is deputy coordinator of an EU FP-7 program (Euro-TEAM: Towards Early Arthritis Management) defining biomarkers of outcome and patient perspectives on these in individuals at risk of RA.
Marie Falahee, PhD, is a Lecturer in Behavioural Rheumatology at the Institute of Inflammation and Ageing, University of Birmingham, United Kingdom. Her research focuses on patient preferences for predictive/preventive strategies and therapeutic interventions for rheumatoid arthritis. She also publishes research on strategies to reduce treatment delay for rheumatoid arthritis, patient involvement in rheumatology research, and the use and assessment of patient reported outcomes for inflammatory diseases.
Rebecca Jayne Stack, BSc MBPsS MSc PhD, is a Psychologist with an expertise in Behavioural Medicine and Health Service Research. She has experience and expertise in a range of qualitative methodologies and metasynthesis of qualitative research. Her expertise is in understanding personal decision making surrounding decisions to seek help and the use of pharmacotherapy.
University of Stavanger: Department of Safety, Economics and Planning
Frederic Bouder is Professor at the Faculty of Science and Technology, University of Stavanger, at the Centre for Risk Management and Societal Safety (Norway) and Research Associate at the King’s Centre for Risk Management (UK). Since 2003 he has developed policy oriented research on risk communication and risk regulation, in a range of sectors including pharmaceuticals, biotechnology and Health and safety. In 2009-2010 he was National Expert at the European Medicines Agency. He has over 30 original publications.
Sanja Mrksic Kovacevic is a researcher at the University of Stavanger, at the Centre for Risk Management and Societal Safety (Norway).
Karolinska Institutet and Sophiahemmet University College
Susanne Georgsson Öhman RNM, PhD, is a senior lecturer at Sophiahemmet University College and affiliated to Karolinska Institutet, Department of women’s and children’s health. Her main field of research is informed choice and experiences of prenatal examinations.
Erik Iwarsson, MD, PhD, Clinical Genetics is associated professor at Karolinska Institutet, Department of Molecular Medicine and Surgery. His special field of interest is foetal diagnosis.