Mind the Risk. Ethical, Psychological and Social Implications of Provision of Risk Information from Genetic and Related Technologies

 

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 (Duration 2013 to 2019).

For a description of the project in simple langauge please click here (PDF).

 

Members
Prof. Dr. Silke Schicktanz [more] (PI)
Dr. Sabine Wöhlke [more] (Project coordinator)
Manuel Schaper, M.A. [more
Dr. Zümrüt Alpinar Sencan [more]
Carolin Rauter

Former Members
Julia Perry, M.A. (until June 2017) [more]
Jon Leefmann, M.A. [more] (until April 2016)
Dr. Julia Inthorn [more] (until Oct. 2015)

 

Background

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.

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. Patient Organizations as Stakeholders in the Context of Implementing Genetics and Genomics in Medicine - Genetic risk information is playing an increasingly important role in many areas of medicine, which is why the topic is increasingly affecting patients and patient organizations (POs). Our study will examine, through reports, websites and public statements from various POs, as well as interviews with their representatives, their role in governance of genetic research and its risks and benefits on a national and European level. The study will focus on the areas of pharmacogenetics in cancer treatment, prenatal genetic testing for serious, untreatable pediatric conditions and the genetic risk for late-on-set disease such as Alzheimer’s Disease or rheumatoid arthritis. 

2. Lay perspectives and assessment of the possibilities of genetic diagnostics - We are conducting focus groups with medical laypersons on clinical genetic testing, and commercial genetic testing, called direct-to-consumer genetic testing. This study is conducted in cooperation with GenoPerspektiv funded by the German Federal Ministry of Education and Research (BMBF). Currently (2017-2019) the study makes up the basis for a cross-country and cross-cultural comparison of lay perspectives regarding genetic diagnostics in Germany, UK, Israel and the Netherlands. 

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. As part of a systematic review, this has already been done for social-empirical literature with a thematic relation to "genetic responsibility". 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 offering Direct-to-Consumer Genetic Testing (DTC GT) - A multimodal approach is used to examine the ethical aspects of websites of commercial genetic testing providers. Based on theoretical considerations on the ethical distinction of persuasive communication in the medical and commercial sector, a study using image analysis methodology will examine the marketing strategy and self-representation of the actors in terms of their ethical implications. 

5. Risk communication and risk perception in physician-patient consultations and patient interviews - In an ethical secondary analysis, communication strategies and patterns within risk communication are analyzed in the context of patients’ informed consent procedures regarding treatment and clinical study participation on biomarkers for stratification of colorectal cancer patients.

6. Epistemological reflections of the Concept of Genetic Risk and Ethical Implications - The concept of risk is becoming increasingly important in the context of the medical application of genetic diagnostics and plays a central role in the project. The aim was a philosophical analysis of the concept of risk from a historical and theoretical perspective.

Mind the Risk-Project-Website of the Centre for Research Ethics & Bioethics (Uppsala University)
https://www.crb.uu.se/mind-the-risk/

Results

  • 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

[Download full list of publications]

Workshop on Methods of Genetic Diagnostics, May 04, 2018 

"Fit für das genomische Zeitalter" – A Movie Ethics Quiz, Nacht des Wissens, January 21, 2017 in Göttingen

International 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”, December, 05-06, 2016 in Göttingen. [Download Program

International Workshop "Everything you always wanted to know about genetics – but were afraid to ask", Jan. 11. – 12. 2016 in Göttingen. [Download Program]

International Workshop "Genetic Risk Information – Addressing New Challenges", February 16-17, 2015 in Kassel-Wilhelmshöhe. [Download Program PDF] [Download Abstractbook PDF] [Download Report]

International Workshop "Wie können wir die Medizin individualisieren? Neue Konzepte, Methoden und Strukturen“, December 10, 2014 in Göttingen. [Download Program]

[Download Programm]

Internationaler Workshop „Genetic Risk Information – Addressing New Challenges”, 16.-17. Februar 2015 in Kassel-Wilhelmshöhe.

[Download Programm PDF]
[Download Abstractbook PDF]
[Download Tagungsbericht]

Internationaler Workshop „Wie können wir die Medizin individualisieren? Neue Konzepte, Methoden und Strukturen“, 10. Dezember 2014 in Göttingen.

[Download Programm]

"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“ – AEM Annual Meeting. Köln, 2018 (Sabine together with 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). Lisbon 2018 (Sabine Wöhlke together with J. Perry, Z. Alpinar-Sencan)

Kommunikationsmuster von Ärzten bei der Motivation von Darmkrebs-Patienten zur Teilnahme an Biomarker-Forschung: Eine empirisch-ethische Untersuchung – AEM  Annual Meeting, 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, Belgrade, 2017 (Julia Perry)

Kommunikationsmuster von Ärzten bei der Motivation von Darmkrebs-Patienten zur Teilnahme an Biomarker-Forschung: Eine empirisch-ethische Untersuchung. Jahrestagung der Akademie für Ethik in der Medizin (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 InternetContribution 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)

[Complete list as PDF]

Partner Institutions and Websites

Riskbankens Jubileumsfond - The Swedish Foundation for Humanities and Social Sciences [Website]  

Uppsala University, Centre for Research Ethics & Bioethics (CRB) [Website]

The Interdisciplinary Research Center on Decision Making Processes in Milano [Website]  

The University of Manchester, Centre for Health Economics, Institute for Population Health [Website]  

University of Birmingham and Sandwell & West Birmingham Hospitals NHS Trust [Website]  

Maastricht University, Faculty of Arts and Social Sciences, Department of Technology and Society Studies [Website

Karolinska Institutet, Stockholm [Website]