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

BMC Medical Ethics

Research Article

Bobbie Farsides¹  Gabrielle Natalie Samuel²  Angela Fenwick³  Sandi Dheensa³  Anneke Lucassen⁴ 

[1] Brighton and Sussex Medical School, BN1 9PX, Falmer, UK;Brighton and Sussex Medical School, BN1 9PX, Falmer, UK;Department of Educational Research, Lancaster University, Lancaster, UK;Clinical Ethics and Law, University of Southampton, Southampton General Hospital, South Academic Block, Tremona Road, SO16 6YD, Southampton, UK;Clinical Ethics and Law, University of Southampton, Southampton General Hospital, South Academic Block, Tremona Road, SO16 6YD, Southampton, UK;Wessex Clinical Genetics Service, University Hospitals Southampton Trust, Southampton, UK;

关键词: Consent;    Autonomy;    Genetic testing;    Genomics;    Virtue ethics;    Patient decision-making;    Ethics;   

DOI  :  10.1186/s12910-017-0207-8

 received in 2016-08-16, accepted in 2017-07-24,  发布年份 2017

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© The Author(s). 2017