TY - JOUR

T1 - Healthcare professionals' and patients' perspectives on consent to clinical genetic testing

T2 - moving towards a more relational approach

AU - Samuel, Gabrielle Natalie

AU - Dheensa, Sandi

AU - Farsides, Bobbie

AU - Fenwick, Angela

AU - Lucassen, Anneke

PY - 2017/8/8

Y1 - 2017/8/8

N2 - 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 contextualised - 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.

AB - 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 contextualised - 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.

KW - Consent

KW - Autonomy

KW - Genetic testing

KW - Genomics

KW - Virtue ethics

KW - Patient decision-making

KW - Ethics

KW - INFORMED-CONSENT

KW - INCIDENTAL FINDINGS

KW - INFORMATION

KW - ETHICS

KW - CONFIDENTIALITY

KW - PARTICIPATION

KW - PERCEPTIONS

KW - CHALLENGES

KW - BENEFITS

KW - PRIVACY

U2 - 10.1186/s12910-017-0207-8

DO - 10.1186/s12910-017-0207-8

M3 - Journal article

VL - 18

JO - BMC Medical Ethics

JF - BMC Medical Ethics

SN - 1472-6939

M1 - 47

ER -