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

Abstract

BackgroundThis 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.MethodsWe 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.ResultsOur 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 contextualised – also based on factors outside of information provision.ConclusionsA more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed.

Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study

“…In conclusion, rather than aiming for a fully informed patient decision-making, the issue of IFs might be agreed upon by a dynamic process of shared decision-making in which both the patient and professional participate actively [33]. This idea aligns with the suggestion that counselling and consent should not focus strictly on information provision and patients' individual, rational and autonomous decisions, but should pursue a relational autonomy where patients and professionals reach a decision collaboratively [47]. In such a relational decision-making process, respect for autonomy and beneficence might be expressed in such a way that both values can be respected [48].…”

Autonomous decision-making for antenatal screening in Pakistan: views held by women, men and health professionals in a low–middle income country

“…Non-directiveness is considered a 'gold standard' for respecting patient autonomy, but insisting that couples make antenatal screening decisions themselves when they are vulnerable and dependent on HCPs advice could be seen as undermining their autonomy. 12,23 Therefore, HCPs should enable couples to become active participants in decision-making by encouraging them to express their values, being attentive to their views, then acting in the best interest of the couple. 24 Our findings suggest that there is a need to develop culturally appropriate practice guidelines for use in LMICs to enable HCPs to adopt shared decision-making approaches, particularly for couples lacking confidence in their own decision-making.…”

“…Relational Page 16 approaches in which family members are involved in healthcare decision-making could enhance patients' autonomy and there are calls in Western countries for HCPs in antenatal/genetic services to move towards a more nuanced approach, utilising relational approaches to autonomy to better support women. 12,23 To empower women in Pakistan and other LMICs in a culturally appropriate way, further research is needed to understand how relational approaches could be adopted to facilitate a joint decisionmaking approach for couples. Research on how to involve the father in screening decisions should focus on how to empower women, ensuring that women's autonomy is not constrained through deference to men and that women are not marginalised.…”

“…11 The importance of decision-making with the partner to enhance women's autonomy in pregnancy is recognised, 9 particularly by proponents of relational autonomy who believe shared decision-making can better support women by preventing feelings of helplessness and isolation. 12 The need for research in LMICs on men's views about women's autonomy in maternal healthcare, 13 including antenatal screening, 5 is also acknowledged.…”

Perspectives on Achieving Institutional Trust in Personalized Medicine

“…First, Kraft and colleagues' work adds to an already increasing body of social science and anthropology literature which questions the adequacy of informed consent as a proxy for ethical medical/research practice (O'Neill, 2002), including that of personalized medicine (Samuel et al, 2017). This literature particularly problematizes the role of consent as a tool for information provision (Koening, 2014).…”