Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach
Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach
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DOI：
10.1186/s12910-017-0207-8
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发表时间：
2017-08-08
影响因子：
2.7
通讯作者：
Lucassen, Anneke
中科院分区：
文献类型：
--
作者：
Samuel, Gabrielle Natalie;Dheensa, Sandi;Lucassen, Anneke
背景资料：本文提出了一个重新关注同意临床基因检测，远离强调自主权和信息提供，对医疗保健专业人员寻求同意的美德，以及他们与患者的关系建设的重点。方法：我们利用在临床遗传学领域工作的英国医疗保健专业人员的焦点小组，以及对在英国国民健康服务体系中寻求基因检测的患者进行的深入访谈（2013-2015年收集的数据）。我们探讨了同意的两个方面：第一，医疗保健专业人员如何考虑“同意”患者的行为;第二，这些专业的账户，沿着患者的账户，如何加深我们对同意过程的理解。我们的研究结果表明，虽然从事遗传医学工作的医疗保健专业人员付出了很大努力，以确保患者了解他们即将进行的基因测试，他们承认，我们发现，患者仍然可以在相对不知情的情况下离开遗传咨询。此外，我们还展示了如何强调基因检测的信息方面并不总是反映患者的决策或对患者的决策有价值。相反，决策是社会语境化的-也基于信息providing.Conclusions以外的因素：一个更具协作性的持续同意过程，接地美德道德和诚实，开放和可信的价值观，提出。
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.