Mind the Risk. Ethical, Psychological and Social Implications of Provision of Risk Information from Genetic and Related Technologies
Department of Medical Ethics and History of Medicine
Funding: Riksbankens Jubileumsfonds for the Humanities and Social Sciences
Carried out by:
- Dr. Sabine Wöhlke (Projektkoordination)
- Manuel Schaper, M.A.
New technologies of genetic diagnostics let us predict the risk of future diseases in a time in which the number of diseases connected to genetic factors is increasing. Genetic diagnostics thus is playing an increasingly important role in individualized medicine. At the same time, questions regarding the assessment of genetic risks and issues of individual and collectively dealing with these risks are arising. Institutions, health care systems, policymakers as well as patients will have to find ways to address these issues.
Mind the Risk is an international research cooperation with institutions in Uppsala, Manchester, Milan, and Stockholm funded by the Swedish “Riksbankens Jubileumsfonds for the Humanities and Social Sciences”. The project has an interdisciplinary approach with experts in medical ethics, philosophy, psychology, sociology, public health, medicine, and health economics.
Our sub-project in Mind the Risk examines ethical issues regarding the communication of genetic risks, the perception of responsibility in the context of genetic diagnostics as well as lay people’s attitudes towards the possibilities of genetic diagnostics and direct-to-consumer genetic testing.
1. lay perspectives and evaluations of new genetic diagnostic options. We conduct focus groups with medical laypersons on clinical genetic testing, and commercial genetic testing offers, so-called direct-to-consumer genetic testing. This study is conducted in cooperation with the BMBF project Genoperspektiv. Currently (2017-2019), we are conducting a cross-national and cross-cultural comparative study of this lay perspective on genetic diagnostics in Germany, the UK, Israel and the Netherlands.
2. patient organizations as stakeholders in the context of implementation of genetics and genomics in medicine - Genetic risk information is playing an increasingly important role in many areas of medicine, and therefore the topic increasingly involves patients and patient organizations (POs) as their proxies. Our study will use reports, websites, and public statements from various POs, as well as interviews with their representatives, to examine how they perceive their role in the governance of genetic research and its risks and benefits at the national and European levels. The study will focus on pharmacogenetics in cancer therapy, prenatal genetic testing for serious untreatable pediatric diseases, and genetic risk for late-stage diseases such as Alzheimer's dementia or rheumatoid arthritis.
3. Theoretical and empirical-ethical analysis of the concept of "genetic responsibility" - The aim is to analyze the emergence and use of the concept of genetic responsibility. This has already been done for socio-empirical literature with thematic reference to "genetic responsibility" in the context of a Systematic Review. The use of the term and its normative dimension in the context of genetic risk was addressed in another theoretical article.
4. Ethical analysis of communication content on websites of direct-to-consumer genetic testing (DTC GT) providers - using a multimodal approach, websites of commercial genetic testing providers are examined with regard to ethical aspects. Based on theoretical considerations on the ethical distinction between persuasive communication in the medical and commercial sector, an investigation by means of image-analytical methodology will be conducted into the marketing strategy and self-dramatization of the actors with regard to their ethical dimension.
5. Risk communication and risk perception in educational talks and patient interviews - by means of ethical secondary analysis, communication strategies and patterns in risk communication in the context of patient education about therapy and clinical trial of biomarkers for stratification of colorectal cancer patients are analyzed.
6. science-theoretical considerations on the concept of genetic risk and ethical implications - The concept of risk is becoming increasingly important in the context of medical application of genetic diagnostics and plays a central role for the project. The aim was a philosophical analysis of the concept of risk from a historical and theoretical perspective.
- Wöhlke, S., Schaper, M., Schicktanz, S. (2019): How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication, Front. Genet., https://doi.org/10.3389/fgene.2019.00380
- Schaper, Manuel / Schicktanz, Silke: Medicine, Market and Communication: Ethical Considerations in Regard to Persuasive Communication in Direct-to-Consumer Genetic Testing Services. BMC Medical Ethics. doi.org/10.1186/s12910-018-0292-3 [LINK]
- Manuel Schaper, Sabine Wöhlke, Silke Schicktanz: "I would rather have it done by a doctor"-laypeople's perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications. Medicine, Health Care and Philosophy (2018). doi.org/10.1007/s11019-018-9837-y [LINK]
- Wöhlke, Sabine, Perry, Julia, Schicktanz, Silke (2018): Physicians’ communication patterns for motivating colorectal cancer patients to biomarker research: empirical insights and ethical issues, Clinical Ethics.
- Jon Leefmann, Manuel Schaper and Silke Schicktanz (2017): The concept of “Genetic Responsibility” and its meanings: A systematic review of qualitative medical sociology literature, Frontiers in Sociology/ELSI in Science and Genetics, 1(18):1-22. [LINK]
- Silke Schicktanz (2018): Genetic risk and responsibility: reflections on a complex relationship, Journal of Risk Research, 1-23. doi.org/10.1080/13669877.2016.1223157
- "Genetische Risikoinformationen per Mausklick? Ethische Perspektiven auf Online-Vermarktung von Direct-to-Consumer-Gentests (DTC GT)" - Jahrestagung der AEM. Köln, 2018 (Manuel Schaper)
- Poster: „Moralische Unsicherheit medizinischer Laien bei der Risikokommunikation prädiktiver Gentests. Empirische Ergebnisse einer Fokusgruppenstudie“ – Jahrestagung der AEM. Köln, 2018 (Sabine Wöhlke gemeinsam mit M. Schaper, S. Schicktanz)
- „How uncertainty influences lay people’s attitudes and risk perceptions concerning predictive genetic testing“ – European Association of Centers of Medical Ethics (EACME) Annual Conference: ETHICS IN ACTION (Sabine Wöhlke)
- „Poster: Genetic risk information: How do family aspects affect expectations towards predictive genetic tests?“ – European Society of Health and Medical Sociology (ESHMS). Lissabon 2018 (Sabine Wöhlke gemeinsam mit J. Perry, Z. Alpinar-Sencan)
- Kommunikationsmuster von Ärzten bei der Motivation von Darmkrebs-Patienten zur Teilnahme an Biomarker-Forschung: Eine empirisch-ethische Untersuchung, Jahrestagung der AEM. Hannover, 2017 (Sabine Wöhlke, Julia Perry)
- Physicians’ communication patterns for motivating rectal cancer patients to biomarker research participation: empirical insights and ethical issues. 31st European Conference on Philosophy of Medicine and Health Care, Belgrad, 2017 (Julia Perry)
- Lay perspectives on direct-to-consumer genetic testing in Germany. 31st Conference on Philosophy of Medicine and Healthcare, Belgrad, 2017 (Manuel Schaper)
- “I'd rather have it done by a doctor” - Lay Perspectives on Direct-to-Consumer Genetic Testing in Germany. Mind the Risk Project Workshop, Bowness on Windermere, 2017 (Manuel Schaper)
- The risks they are a changin’ –how do individual differences in disease perception affect the opportunities and limitations of predictive genetic testing. Preliminary results from focus group research with lay people. Mind the Risk Project Workshop, Bowness on Windermere, 2017 (Julia Perry)
- Long-term decision-making in the context of predictive diagnostics, Symposium: The ethics of physician-patient communication and decision-making. Combining empirical findings with normative analysis, Amsterdam, 2016 (Silke Schicktanz, invited talk)
- Participatory Ethics, World Congress of Bioethics, Edinburgh, 2016 (Silke Schicktanz)
- Ethical Counselling in the age of personalized medicine and diversity issues: Is personalized medicine and socio- cultural sensitive risk communication an oxymoron? Liesel Beckmann Symposium, München, 2016 (Silke Schicktanz, invited talk)
- Between uncertainties, risk communication and biomarker research: Conversation strategies or barriers between physicians and colorectal cancer patients. Winter Workshop: Shared decision-making in the context of personalized medicine and patient-centered care – Ethical issues, new methods, and dimensions in the field of oncology, Göttingen, 2016 (Sabine Wöhlke)
- Mein Arzt meine Daten und ich. Meine Gesundheit geht ins Netz.Teilnahme Podiumsdiskussion im Rahmen der Veranstaltungsreihe zum Thema: Digitalisierung des Gesundheitswesens, Braunschweig, 2016 (Sabine Wöhlke)
- Ethical Aspects of Communication Practices in Web-Based Direct-to-Consumer Genetic Testing Services, Center for Research Ethics and Bioethics, Uppsala University, 2016 (Manuel Schaper)
- Ethische Aspekte von Kommunikationpraxen kommerzieller Gentestanbieter im Internet. Contribution to the Annual Conference of the Academy of Ethics in Medicine, Bielefeld, 2016 (Manuel Schaper in collaboration with Sabine Wöhlke)
- Between uncertainties, risk communication and biomarker research: Physicians’ conservation strategies: Empirical findings from a qualitative study. EACME Annual Conference: „30 Years of European Bioethics“. Leuven, 2016 (Sabine Wöhlke)
- Ethical Aspects of Communication Practices in Web-Based Direct-to-Consumer Genetic Testing. EACME Annual Conference: „30 Years of European Bioethics“. Leuven, 2016 (Manuel Schaper)
- A focus group approach to risk perception and communication in clinical and direct-to-consumer genetic testing (DTC GT) and whole genome sequencing with lay people and users - Mind the Risk Project Workshop “From theory to practice: Clinical and practical applications of genetic risk research”, Birmingham, 2016 (Manuel Schaper)
- Workshop: Interdisziplinäre Perspektiven auf die Auswirkungen neuer diagnostischer Möglichkeiten in der Medizin. 04. Mai 2018 in Göttingen
- Interner Workshop "Presentation of (preliminary) project results, 20. Dezember 2017 in Göttingen
- Workshop zu Verfahren genetischer Diagnostik, 04. Mai 2018 in Göttingen.
- „Fit für das genomische Zeitalter“ - Das große Spielfilm-Ethik-Quiz im Rahmen der Nacht des Wissens, 21. Januar 2017 in Göttingen.
- Internationaler Workshop „Shared decision-making in the context of personalized medicine and patient-centered care –Ethical issues, new methods, and dimensions in the field of oncology", 05. - 06. Dezember 2016 in Göttingen.
- Internationaler Workshop „Everything you always wanted to know about genetics – but were afraid to ask“, 11. – 12. Januar 2016 in Göttingen.
- Internationaler Workshop „Genetic Risk Information – Addressing New Challenges”, 16.-17. Februar 2015 in Kassel-Wilhelmshöhe.
- Internationaler Workshop „Wie können wir die Medizin individualisieren? Neue Konzepte, Methoden und Strukturen“, 10. Dezember 2014 in Göttingen.
Partner institutions and websites
- Riskbankens Jubileumsfond - The Swedish Foundation for Humanities and Social Sciences [Website]
- Universität Uppsala, Centre for Research Ethics & Bioethics (CRB) [Website]
- The Interdisciplinary Research Center on Decision Making Processes in Milano [Website]
- Universität Manchester, Centre for Health Economics, Institute for Population Health [Website]
- Universität Birmingham and Sandwell & West Birmingham Hospitals NHS Trust [Website]
- Universität Maastricht, Faculty of Arts and Social Sciences, Department of Technology and Society Studies [Website]
- Karolinska Institutet, Stockholm [Website]
- Sophiahemmet University, Stockholm [Website]