Duties of Care in Genetic Testing: Law and Medical Practice

这项研究将解决当患者的基因检测揭示了对第三方有重要意义的信息时所产生的法律问题。遗传信息挑战了有关受影响各方权利和义务的传统法律和伦理规范。从本质上讲，它既是个人的，也是家族的。它可以为先证者提供诊断，同时对第三方也有价值，即主动筛查。调和相互竞争的利益对法律和医学来说都是一项艰巨的挑战。这项研究旨在帮助临床医生在复杂的法律环境中导航，同时尊重患者对遗传信息的权利，并保持公众对该系统的信任和信心。它将采用社会科学的研究方法，包括访谈和观察，以阐明法律在有关制度背景下的工作。最近的ABC诉圣乔治医疗保健NHS信托案证明了这项研究的话题性，该案件突出了基因检测中复杂的伦理和法律困境。法律问题是被告（NHS信托）是否对第三方（先证者的女儿）负有注意义务，这将证明在未经患者同意的情况下违反患者机密是合理的。被告成功地辩称，施加这样的注意义务是不公平、公正和合理的。然而，该判决并未反映当前关于遗传信息的学术辩论或临床实践（Dheensa 2016）。对遗传医学中患者对同意、保密和信息共享的看法的研究表明，患者对与有风险的亲属共享信息的想法感到满意（Dheensa 2015）。研究还表明，专业人员不一定会像ABC中建议的那样发现强加义务的繁重，但他们并不总是清楚如何处理遗传学中相互冲突的义务。(Lucassen 2014)。社会科学家、临床医生和法律学者已经定义了许多遗传学特有的问题：基因检测和隐私（Kaye 2014）、基因检测和自主权（Chico 2011）、知情权与不知情权（Chadwick 1999）。这种理论分析产生了潜在的模型，可以支持与第三方的信息共享。但是，它们还没有经过改进或测试，以评估它们帮助临床医生应对复杂的法律和道德挑战的能力，或者确定它们是否破坏了公众对医生和护士的信任和信心。对患者、家属和临床医生进行实证研究将产生可转化为专业实践、政策或法律改革建议的信息。为了实现这一目标，我将进行理论分析，对当前文献和关键利益相关者的实证研究进行回顾。以临床观察、半结构化和结构化访谈的形式对专业人员和患者进行研究，将产生可以进行主题分析的数据，以确定：——照顾义务的范围如何影响决策——分享遗传信息是否被概念化为患者和专业人员的法律义务或道德义务，以及这如何影响决策——什么可以提高临床决策的质量和一致性——什么时候分享个人信息不再是利他主义而变成侵权行为

The research will address the legal issues raised when genetic testing of a patient reveals information that is of significance to a third party. Genetic information challenges traditional legal and ethical norms regarding the rights and obligations of affected parties. It is by its very nature simultaneously personal and familial. It can provide a diagnosis for the proband whilst being of value to third parties ie proactive screening. Reconciling the competing interests is a difficult challenge for both law and medicine. This research seeks to help clinicians navigate the complex legal environment, while respecting patients' rights over genetic information and maintaining public trust and confidence in the system. It will employ social science research methods, including interviews and observation, to shed light on the working of the law in the institutional contexts in question. The topicality of the research is demonstrated by the recent case ABC v St George's Healthcare NHS Trust, which highlights the complex ethical and legal dilemmas within genetic testing. The legal question was whether the defendants (an NHS Trust) owed a duty of care to a third party (the daughter of the proband) which would justify breaching patient confidentiality without the patient's consent. The defendant successfully argued that it would not be fair, just and reasonable to impose such a duty of care. However, the judgment does not reflect current academic debate or clinical practice (Dheensa 2016) regarding genetic information.Research into patient's views about consent, confidentiality and information-sharing in genetic medicine suggests that patients are comfortable with the idea that information is shared with at risk relatives (Dheensa 2015) Research also indicates that professionals do not necessarily find the imposition of a duty as onerous as suggested in ABC but they are not always clear how to approach conflicting duties within genetics. (Lucassen 2014).Social scientists, clinicians and legal academics have defined many of the problems unique to genetics: genetic testing and privacy (Kaye 2014), genetic testing and autonomy (Chico 2011) the right to know versus right not to know (Chadwick 1999).This theoretical analysis has generated potential models that could support information sharing with third parties. But they have not been refined or tested to evaluate their ability to help clinicians navigate the complex legal and ethical challenges or to ascertain whether they undermine public trust and confidence in doctors and nurses. Undertaking empirical research with patients, families and clinicians will generate information that can be translated into recommendations for professional practice, policy or law reform. To achieve this I will undertake a doctrinal analysis, a review of current literature and empirical research with key stakeholders.Research with professionals and patients in the form of clinical observations, semi structured and structured interviews will generate data which can be thematically analysed to identify: - how the scope of the duty of care impacts on decision making- whether sharing genetic information is conceptualised as a legal or a moral obligation by patients and professionals and how this affects decision making- what can increase the quality and consistency of clinical decisions- when does sharing personal information stop being altruistic and become tortious