Healthcare professionals’ and patients’ perspectives on consent to clinical genetic testing: moving towards a more relational approach

Background: This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. Methods: We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service (data collected 2013–2015). We explore two aspects of consent: first, how healthcare professionals consider the act of ‘consenting’patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Results: Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’decision-making. Rather, decision-making is socially contextualises–also based on factors outside of information provision. Conclusions: A more collaborative on-going consent process, grounded in virtue ethics and values of honesty,openness and trustworthiness, is proposed

Prospective study design and data analysis in UK Biobank

Population-based prospective studies, such as UK Biobank, are valuable for generating and testing hypotheses about the potential causes of human disease. We describe how UK Biobank’s study design, data access policies, and approaches to statistical analysis can help to minimize error and improve the interpretability of research findings, with implications for other population-based prospective studies being established worldwide.</p