Duties of Care in Genetic Testing: Law and Medical Practice

Lead Research Organisation: University of Bristol
Department Name: Law

Abstract

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

Publications

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Studentship Projects

Project Reference Relationship Related To Start End Student Name
ES/P000630/1 01/10/2017 30/09/2027
1926357 Studentship ES/P000630/1 01/10/2017 01/06/2022 Melanie Iddon