Responsibility in dealing with genetic risk information

Abstract

Predictive testing information raises questions about risk communication, health responsibility, and about how to deal with the gap between knowledge of risks and options to act on this knowledge. For some diseases identified by predictive testing, specific treatments or interventions are available, while other diseases, thus far, remain untreatable or unpreventable; this triggers different forms of responsibility. Gender also often intersects with moral responsibility, regarding risk communication but also responsibilities of care which may become necessary with a family member's onset of disease. The aim of the study was to analyze laypeople's attitudes towards predictive testing with a special focus on forms of responsibility arising while dealing with uncertainty of risk information. We conducted seven focus groups with laypeople (n = 43) in four German cities in 2016. Participants were provided with different genetic testing scenarios (breast cancer, early-onset Alzheimer's disease, pharmacogenetics in rectal cancer) for discussing their responsibilities and risk perceptions. We identified three different forms of responsibility: self-responsibility and self-care, family responsibility and care for others, and professional responsibility. For laypeople, the decision for predictive genetic testing seems voluntary and free from external constraint; however, both family and professional conditions influence an individual's decision.

Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset Alzheimer’s disease: a qualitative study

“…Factors suggested to influence an individual's decision to engage in predictive testing across all diseases included perceived severity of the illness, treatability, family history, age, health attitudes, upbringing and the presence of co-morbidities. Results for BC and AD aligned with those of a similar study in Germany [25]. However predictive testing was more often perceived in a positive light for BC and AD than for RA in the present study.…”

“…This study was a qualitative study, with an inductive approach, using focus groups following a structured discussion guide incorporating case vignettes [ 23 ]. Focus group with members of the general public were conducted at the Medical School of the University of Birmingham, United Kingdom (UK) between September and October 2017, as part of an international multi-centre comparative study of public perceptions of recent developments in genetic testing [ 24 , 25 ]. Ethical approval was granted by the University of Birmingham Science, Technology, Engineering and Mathematics Ethical Review Committee (ERN_17-0298).…”

“…20 out of 100 people) and using icon arrays. Development of the vignettes for BC and early-onset AD is described in detail elsewhere [24,25]. The vignette relating to RA was developed with input from KR, a male Professor of Rheumatology and Honorary Consultant Rheumatologist with expertise in risk assessment for RA [27,28].…”

German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192)

“…A German study showed that lay people perceive risk information as highly normatively charged, and often as an emotionally significant threat . It would therefore seem to be necessary to provide lay people with a deeper understanding of risk information and of the limitations of genetic knowledge with respect to one's own health responsibility (Wöhlke and Perry, 2019). Similar results were found for lay people in Italy, who perceived genetic testing to be very helpful for disease prevention but were simultaneously afraid that a positive result, the detection of a genetic variant, could affect their life planning and leave them without the ability to act to address the risk (Oliveri et al, 2016a).…”

“…This Has to Do With My Identity. And I Don't Want to Make it Totally Transparent.” Identity Relevance in the Attitudes of Affected People and Laypersons to the Handling of High-Throughput Genomic Data

“…Four vignettes were also used in the focus groups, which, since they were developed in cooperation with another research project, also included other topics (i.e., direct-to-consumer genetic testing, use of biomarkers). This article focuses on the detailed analysis of the third vignette, while the others are analyzed and published elsewhere (Schaper et al, 2018 ; Wöhlke and Perry, 2019 ; Wöhlke et al, 2019 ); this selection is due to the fact that the vignettes were designed to address various ethical issues in the field of genetic and genomic information. The focused analysis took into account the general discussion process and each group dynamic.…”