Projects on Genetics & Individualized Medicine in the Research Group Schicktanz



2013 – 2019: Research Project: "Mind the Risk. Ethical, Psychological and Social Implications of Provision of Risk Information from Genetic and Related Technologies"

Carried out by:
Dr. Sabine Wöhlke swoehlk(at)gwdg.de (Project coordination)
Manuel Schaper, M.A. manuel.schaper(at)medizin.uni-goettingen.de 

Contact:
Prof. Dr. Silke Schicktanz sschick(at)gwdg.de
Funded by: The Riksbankens Jubileumsfonds for the Humanities and Social Sciences
Duration: 2013–2019

Short description
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.

Detailed description of the research project "Mind the Risk"

Project website


2014 – 2017: Research Project: "GenoPerspektiv – Dealing With Genomic High-Throughput Data: The Rerspectives of Clinical Practice, Ethics, Law, and Biomedical Informatics"

Carried out by:
Prof. Dr. Mark Schweda mark.schweda(at)uni-oldenburg.de
Alexander Urban, M.A. alexander.urban(at)medizin.uni-goettingen.de

Contact:   
Prof. Dr. Silke Schicktanz sschick(at)gwdg.de
Funded by: The German Ministry of Education and Research (BMBF)
Duration: 2014–2017

Project website

The clinical implementation of genomic high-throughput technologies raises a variety of questions, some of which are new to medical ethics. In particular, the collection, management and interpretation of large amounts of sensitive genomic data poses a challenge to the established practice of informed consent, so new concepts and approaches may need to be considered.

The medical-ethical subproject investigates the ethical implications of the use of genomic high-throughput technologies, especially with regard to the conventional forms of patient education and informed consent. The perspectives of personally affected persons, participating professional groups and the broader public will be systematically included in the ethical analysis with the help of qualitative methods of empirical social research. Using partially standardized guidelines, interviews will be conducted with patients, their relatives and employees of the health care professions involved in order to examine the moral attitudes, needs and fears of the groups of people involved. The results will be used to develop practical, information technology and legal concepts in the other subprojects, which will then be discussed and evaluated in focus groups with medical laypersons. They will also contribute to the empirical information and theoretical development of the medical-ethical discourse, serve to formulate context-sensitive ethical recommendations for clinical practice, and promote a well-informed and reflected public debate about them.

Schweda, M., Inclusive deliberation on future healthcare. The role of patients and the public in the debate on medical high-throughput technologies. Tagung „Next-Generation Medicine: Ethical, Social, Legal and Technological Questions of Genomic High-Throughput Sequencing in the Clinic“ (25.-26.7.2017) in Göttingen.

Urban, A., Schweda, M. What should you do with this kind of information? Expert and lay perspectives on the utility of genomic high-throughput sequencing (26.7.2017) auf der Tagung „Next-Generation Medicine: Ethical, Social, Legal and Technological Questions of Genomic High-Throughput Sequencing in the Clinic“ (25.-26.7.2017) in Göttingen.

Schweda, M., Ethical aspects of data science applications (20.7.2017) auf der Data Science Summer-School (10.-21.72017) an der Universität Göttingen.

Urban, A., Clinical Implementation of Genomic High-Throughput Sequencing: Perspectives Of Experts And Patients in Germany. International Conference "30 Years of Bioethics", European Association Of Centres Of Medical Ethics (EACME), 08.-10. September 2016, Katholische Universität Leuven, Belgien.

Urban, A., Social Impact of Genomic High-Throughput Data: Moral Perspectives and Self-Expression in the Era of Next Generation Sequencing. Interdisciplinary Winter School "Integration and Translation in Systems Medicine", 01.-05. Februar 2016, am Forschungsschwerpunkt Biotechnik, Gesellschaft und Umwelt (BIOGUM), Universität Hamburg.

Urban, A., & Schweda, M., Zum Umgang mit genomischen Hochdurchsatzdaten: Moralische Perspektiven von Experten. Erste Ergebnisse einer qualitativen Interviewstudie. Workshop der ELSA-Projekte am 27. April 2016 in Berlin.

Urban, A. & Schweda, M., Zum Nutzen genomischer Hochdurchsatztechnologien in der Klinik: Perspektiven von Experten und Betroffenen. Workshop „Next-Generation Medicine: Ethical, Social, Legal and Technological Questions of Genomic High-Throughput Sequencing in the Clinic.” am 14. / 15. November 2016 in Göttingen. 

Urban, A. & Schaper, M., Lay Perspectives on Genomic Sequencing in Clinical and Direct-to-Consumer Contexts in Germany. Posterbeitrag zum Workshop des GenoPerspektiv-Konsortiums "Next Generation Medicine - Ethical, Legal and Technological Questions of Genomic-High Throughput Sequencing in the Clinic", 14.-15. November 2016, Universitätsmedizin Göttingen.


2013 – 2015: Research Project: "Preconceptional Genetic Carrier Screening on Rare Diseases: Social Implications, Ethical Problems and the Perspective of Patient Organizations"

Carried out by:
Dr. Julia Inthorn jinthor(at)gwdg.de (PI ethical subproject)
PD Dr. Peter Wehling, Goethe University Frankfurt (PI sociological subproject)

Contact:
Prof. Dr. Silke Schicktanz sschick(at)gwdg.de
Funded by: The German Ministry of Education and Research (BMBF)
Duration: 2013–2015

Project website

In this interdisciplinary research project we explore the social and ethical implications of preconceptional genetic carrier screening. Genetic tests that can tell couples if they are both carriers of the same autosomal recessive disease are currently developed and already commercially available in some countries. The newly developed tests aim at screening for carrier status for several hundred recessive diseases. Such tests can (potentially) be offered to all couples before a pregnancy (preconceptional) who are planning to have children. They offer information about the risk of future children being affected of those diseases. Preconceptional carrier screening can be seen as a new option for preventing rare diseases. At the same time it can have major social implications (e.g. social pressure on couples to use such a test) and raises ethical questions (e.g. on which grounds should the diseases tested for be chosen).

The research consortium will analyse potential risks and benefits of preconceptional genetic carrier screening by combining the perspectives and methods from sociology and medical ethics. A shared starting point will be the systematic integration of the perspective of patients with rare diseases, their relatives and patient organizations, who might be especially affected of the new technology. The project aims at developing recommendations for the responsible use of preconceptional genetic carrier screening and wants to contribute to a public debate about it that already accompanies the development and commercial launch. In the empirical part of the project  qualitative methods will be used (interviews and focus group discussions with affected persons and potential users). Based on the empirical results an ethical analysis of risks and benefits of potential ways of usage of the new technology will be conducted.


2011 – 2014: Research Project/Subproject 9: "Ethical Aspects in Individualized Rectal Cancer Therapy: Patients’ Expectations and Attitudes Toward Prognostic Tests Using Biomarkers. A Socio-Empirical and Medical-Ethical Analysis"
Within the clinical research group (KFO 179/2) "Biological Basis of Individual Tumor Response in Patients with Rectal Cancer"

Carried out by:
Dr. Sabine Wöhlke sabine.woehlke(at)gwdg.de

Contact:
Prof. Dr. Silke Schicktanz schick(at)gwdg.de 
Funded by: The German Research Foundation (DFG)
Duration: 2011–2014

In this sub-project different ethical and social aspects in individualized medicine will be investigated, particularly focusing on the perspective of the affected themselves. The project has been newly integrated in the KFO 179/2 research network for the second funding period.New technologies and biological-genetic information exert a strong influence on both the physician-patient relationship and on bio-political and legal debates. Information is increasingly complex so that opportunities and risks of treatment have to be continually re-evaluated. Moreover medical information can also prove relevant in other contexts (family and life planning, insurance). The growing use of biomarkers to anticipate the course of treatment is supposed to increase the individual patient’s quality of life and facilitate focused decisions. Through accompanying ethical research during early stages of clinical research it is possible to investigate long-term effects on the physician-patient relationship and the clinical setting. This also means that research can identify ambiguities and possible future conflicts as well as expectations and develop ethical approaches.Through qualitative socio-empirical methods of direct observation and in depth interviews with patients this project aims to collect and analyze patients’ attitudes and expectations.Subsequently our research will focus, on the one hand, on the basis for information, autonomy and trust in the physician-patient relationship and, on the other hand, on patients’ expectations and/or experience in “individualized” rectal cancer therapy. With reference to the content of information we will investigate the understanding and handling of scientific facts and data in the way patients are combining these in the decision-making process.Integrating socio-empirical inquiry into medical ethics allows for the collection of detailed information and practical insights into everyday practice from the point of view of the patients.The investigation and reflection of the patients’ point of view builds on previous work which considers physicians’ and scientists’ attitudes toward pharmacogenomics in rectal cancer therapy, conducted in KFO 179. (Cand. Med. Arndt Hessling). 

In summary, sub-project 9 will work toward the following objectives:

  • First we will identify the attitudes of patients and their relatives toward prognostic tests for biomarkers and their influence on the evaluation of cancer therapy over a longer period of time. In so doing, we will focus on (among others) the following four aspects: patients’ expectations of their own chances of survival and benefits for their quality of life; trust and mistrust in scientific and practical aspects; understanding and realization of patient autonomy in decision-making processes as well as lay persons’ understanding and interpretation of specifically medical aspects 
  • Consequently we will analyze the impact of different values as well as social-cultural factors (gender, age, religion) in the context of decision making.
  • Finally this project will highlight similarities and differences in attitudes and expectations in the perspectives of patients and physicians with reference to personalized therapy.

The results will be integrated into practical ethical guidelines for shared decision making between physician and patient and thus help to consider the consequences of these medical-technological advances. 

Final workshop "How can we individualize medicine? New concepts, methods and structures" 

This workshop was the conclusion of our subproject of the Clinical Research Group (KFO 179/2) "Ethical aspects in individualized rectal cancer therapy: patient expectations and attitudes towards prognostic tests with biomarkers. A socio-empirical and medical-ethical analysis" (2011-2014). The workshop took a look into the future and focused on new concepts, methods and structures that can do justice to an individualised medicine.  

The workshop was attended by scientific experts from the fields of medicine, medical sociology, public health and health sciences, especially technology assessment. Program:  (Flyer) (Poster)  

  • Wöhlke, S., Perry, J., Schicktanz, S. Physicians’ communication patterns for motivating colorectal cancer patients to biomarker research: empirical insights and ethical issues, Clinical Ethics (First Published June 7, 2018, https://doi.org/10.1177/1477750918779304)

  • Perry, J., Wöhlke, S., Heßling, A. C. and Schicktanz, S. (2016). Why take part in personalised cancer research? Patients’ genetic misconception, genetic responsibility and incomprehension of stratification—an empirical-ethical examination. European Journal of Cancer Care, 00: 1–12. doi: 10.1111/ecc.12563
    • Publication awarded as GöVIP (Very Important Publications) in the category Clinical Science (Link)
  • Sabine Wöhlke, Julia Perry and Silke Schicktanz, S. (2015). Taking it Personally: Patients’ Perspectives on Personalised Medicine and its Ethical Relevance. In: J. Vollman, V. Sandow, S. Wäscher and J. Schildmann, ed., The Ethics of Personalised Medicine: Critical Perspectives. Farnham: Ashgate, p. 129-147. 
  • Schicktanz, Silke (2014): „Individualisierte Patientenversorgung“ Große Hoffnungen und viele offene Fragen. In: Gerechte Gesundheit. Newsletter zur Verteilungsdebatte, 26, S. 2-3.
    Newsletters Gerechte – Gesundheit (PDF)
  • Silke Schicktanz, Sabine Wöhlke (2014): Assessing the personal perspective. In: International Innovation, 1, p. 18-20. ( Artikel zum Download (PDF) )
  • Hessling, Arndt (2014): Exploration medizinethischer Implikationen individualisierter Medizin beim lokal fortgeschrittenen Rektumkarzinom aus Sicht von Ärzten und Forschern, eine empirisch-ethische Untersuchung (Dissertation an der Universitätsmedizin Göttingen)
  • Genetics as Social Practice. Transdisciplinary Views on Science and Culture (2013), gem. mit Barbara Prainsack und Gabriele Werner-Felmayer, ASHGATE. http://www.ashgate.com/isbn/9781409455493
  • Wöhlke, S., Hessling, A., Schicktanz, S. (2013): Wenn es persönlich wird in der „personalisierten Medizin“: Aufklärung und Kommunikation aus klinischer Forscher- und Patientenperspektive im empirisch-ethischen Vergleich. Ethik in der Medizin, 25, 3. Themenheft: Schildmann, J., Marckmann, G., Vollmann, J. (Hg.): Personalisierte Medizin. Medizinische, ethische, rechtliche und ökonomische Analysen, S. 215-222. 
    http://link.springer.com/article/10.1007/s00481-013-0263-7
  • Schicktanz, S (2012): Bioethik und Gesundheitspolitik, Politikberatung im Spannungsfeld von Expertenwissen und Patientenperspektive. In: Weilert K, Hildemann, P. (Hg.): Ethische Politikberatung, Baden-Baden: Nomos, 275-296.
  • Hessling, A., Schicktanz S. (2012): What German experts expect from individualised medicine: problems of uncertainty and future complication in physician-patient-interaction, Clinical Ethics, 7: 86–93.
    http://cet.sagepub.com/content/7/2/86.abstract
  • Hessling, A. (2012): "Everything better than 50% is better than now.“ In: Dabrock, P., Braun, M., Ried, J.: Individualized Medicine between hype and hope. Exploring ethical and societal challenges for healthcare, Lit-Verlag, Münster, S. 111-135.

2010 – 2012: Research Project: "Cross-Cultural Ethics of Health and Responsibility: Expert and Lay Perspectives Regarding Bioethical Dilemmas in Germany and Israel"

Carried out by:
Dr. Julia Inthorn jinthor(at)gwdg.de
Dr. Nitzan Rimon-Zarfaty nitzan.rimon-zarfaty(at)medizin.uni-goettingen.de

Contact:
Prof. Dr. Silke Schicktanz sschick(at)gwdg.de
Funded by: The German-Israeli Foundation for Scientific Research and Development (GIF)
Duration: 2010–2012

Previous studies have shown Israel and Germany to constitute opposites in terms of professional culture, and their juxtaposition is thus expected to highlight the context of cultural variation and pluralism in the moral assessment and evaluation of bioethical dilemmas. However, we also expect to find overarching principles, moral attitudes and general social conflicts related to health care and research in biomedicine which are shared by Israeli and German lay people - patients and non-patients. These overarching phenomena might offer a basis for developing cross-cultural robust ethical principles for biomedicine. 

Against this background, the current GIF (German-Israeli Foundation) research project "Cross-Cultural Ethics of Health and Responsibility: Expert and lay perspectives regarding bioethical dilemmas in Germany and Israel" (PIs: Aviad E. Raz and Silke Schicktanz, 2010-2012, with the assistance of: Dr. Julia Inthorn and Nitzan Rimon-Zarfaty) extends the conventional comparative analysis of expert discourse in Germany and Israel by exploring the 'public moralities' of lay people (including those affected by a disease) regarding responsibility in the context of end-of-life (EoL) decisions and genetic testing (GT) of adults. In addition to the analysis of guidelines and bioethical expert discourses, the methodology comprises focus group discussions with lay persons comprising affected, religious, and national categories. Major topics we are interested in include lay notions of responsibility, hopes/fears, duties and rights when using, discussing or rejecting biomedical options such as genetics and advance directives for planning family or one's life. These will be further compared within the context of other important cultural factors such as religion, concepts of health/illness and consumerism. 

The main research steps are: 

  1. Analysis of comparative background and baseline information; 
  2. Focus groups with lay people in Germany and Israel; 
  3. Comparative analysis of moral argumentation, especially regarding constructions of responsibility; 
  4. Comparative analysis of cultural factors underlying moral argumentation; 
  5. Reflection and dialogue, including meta-ethical and methodological aspects of the inter-relations between empirical and ethical assumptions.

The current project is part of a continuing enterprise comprising several research projects and workshops. Preliminary studies conducted by Raz and Schicktanz (2009a,b) examined lay attitudes (including attitudes of people affected by genetic diseases) in Germany and Israel towards genetic testing of adults, focusing on the differences between cultural and personal argumentations, as well as between affected and non-affected perspectives. With regard to three major emerging themes – medical technology/technocratic medicine; economic aspects of healthcare; and personal decision-making – a national contrast was apparent on the cultural level of argumentation, but not in the personal context of decision-making or in the concerns of people affected by genetic diseases. Preliminary analysis revealed three major themes of 'genetic responsibility' towards risk, where national differences need to be studied further: self-responsibility, responsibility for kin, and responsibility of society towards its members. In the context of end of life (EoL) policies, our preliminary comparisons revealed Israel to be more restrictive in relation to Germany in terms of how patients' autonomy and doctors' duties are morally and legally balanced, for example with respect to the withholding and withdrawing of medical treatment in EoL situations and the implementation of advance directives (Schicktanz, Raz, and Shalev, 2010).

"Genetics as Culture in a Conumerist Age", International Symposium, October 2011, Hotel Grauer Bär, Innsruck (Austria).
You can find the programme here (PDF)

The project builds on previous work:
"Genetics and Society: Practices/Positions, Expert/Public Discourses", BGU, December 2008. The results of the workshop were published in a special issue (co-edited by Raz and Schicktanz, 2010) of the journal New Genetics and Society. (link to the Special Issue)

Raz, A., and S. Schicktanz (2009a). Lay Perceptions of Genetic Testing in Germany and Israel. New Genetics and Society 28(4): 401-414. 

Raz, A., and S. Schicktanz (2009b). Diversity and Uniformity in Genetic Responsibility: Moral Attitudes of Patients, Relatives and Lay People in Germany and Israel. Medicine, Healthcare and Philosophy 12(4): 433-442. 

Raz, A., and S. Schicktanz (2010a). Through the Looking Glass: Engaging in a Socio-Ethical, Cross-Cultural Dialogue. New Genetics and Society 29(1): 55-59. 

Schicktanz, S., A. Raz, and C. Shalev (2010b). Cultural Impacts on End of Life Ethics: A Cross-Comparative Study between Germany and Israel. Cambridge Quarterly of Healthcare Ethics, 19,  3, 381-394. 

Schicktanz, S., Raz A. & Shalev C. (2010c) The cultural context of patient autonomy and doctors duties: Passive euthanasia and advance directives in Germany and Israel. Medicine, Health Care and Philosophy 13(4), 363-369.

New Genetics and Society (2010), special issue: Genetics and Responsibilities: Cultural Perspectives, Public Discourses and Ethical Issues, guest editors: S. Schicktanz and A. Raz.

Medicine Studies (2012), thematic issue: Responsibility in Biomedical Practice, guest editors: S. Schicktanz and A. Raz.


2001: Project Leadership: "First Nation-Wide Citizen Consensus Conference on Genetic Testing"

Contact:
Prof. Dr. Silke Schicktanz sschick(at)gwdg.de
Funded by: The Deutsches Hygiene-Museum Foundation in Dresden
Duration: 2001

In fall 2001, the Deutsches Hygiene-Museum organized the first nationwide Citizens' Conference: Genetic Diagnostics as a Case of Conflict [Bürgerkonferenz: Streitfall Gendiagnostik]. During the consensus conference, citizens dealt intensively with the advantages and disadvantages of genetic diagnostics and discussed the technology, its consequences, possible fears and hopes with scientists. The 19-member group used an opinion-forming process lasting several weeks to draft a joint assessment of the opportunities and risks of genetic diagnostics.

Bürgerkonferenz: Streitfall Gendiagnostik - Ein Modellprojekt der Bürgerbeteiligung am bioethischen Diskurs, Eds.: Silke Schicktanz, Jörg Naumann (2003) Link to the book (in German)

Review of the book (by Anke Rösener; in German)

Bilow, Uta (Deutschlandfunk): „Streitfall Gendiagnostik: Bürgerkonferenz legt Positionspapier vor“ view article (in German)

Heinrich Böll Stiftung: „Bürerkonferenz“ view article (in German)

Sellnow, Reinhard (Wegweiser Bürgergesellschaft): „Praxis Konsen­sus­kon­fe­renz: Gen-Diagnostik Dresden“ view article (in German)

Wingender, Christoph (Stiftung Deutsches Hygiene-Museum): „Bürgerkonferenz Streitfall Gendiagnostik“ view article (in German)

Zimmer, René (Fraunhofer-Institut für Systemtechnik und Innovationsforschung): „Bürgerkonferenz 'Streitfall Gendiagnostik' - Meinungsbildung im Rahmen partizipativer Technikfolgenabschätzung“ view article (PDF) (in German)