Ethical Aspects in Individualized Rectal Cancer Therapy: Patients’ Expectations and Attitudes Toward Prognostic Tests Using Biomarkers.

Summary

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.