Final published version
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Healthcare professionals' and patients' perspectives on consent to clinical genetic testing : moving towards a more relational approach. / Samuel, Gabrielle Natalie; Dheensa, Sandi; Farsides, Bobbie et al.
In: BMC Medical Ethics, Vol. 18, 47, 08.08.2017.Research output: Contribution to Journal/Magazine › Journal article › peer-review
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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 -