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
Funded by:The German Research Foundation (DFG)
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.
- Wöhlke, S. / Perry, J. / Schicktanz, S. (2018). 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. / 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)
- Wöhlke, S. / Perry, J. / 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, 129-147.
- Schicktanz, S. (2014): „Individualisierte Patientenversorgung“ Große Hoffnungen und viele offene Fragen. In: Gerechte Gesundheit. Newsletter zur Verteilungsdebatte, 26, 2-3.
Newsletters Gerechte – Gesundheit (PDF)
- Schicktanz, S. / Wöhlke, S. (2014). Assessing the personal perspective. In: International Innovation, 1, 18–20. ( Artikel zum Download (PDF) )
- Hessling, A. (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, 215-222.
- 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.
- 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. Münster: Lit-Verlag, 111-135.