The Duty of Confidentiality and Genetic Information: Who Has a Right to Know? A Response to ABC v St George's Healthcare NHS Trust & Ors [2017] EWCA CIV 336

• Author: Juliana Gleeson
• Position: BCL International (UCC), LLM Candidate (University of Edinburgh)
• Pages: 1-20

(2019) 18 COLR 1

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THE DUTY OF CONFIDENTIALITY AND GENETIC INFORMATION: WHO HAS

A RIGHT TO KNOW? A RESPONSE TO ABC V ST GEORGE'S HEALTHCARE NHS

TRUST & ORS [2017] EWCA CIV 336

Juliana Gleeson*

A INTRODUCTION

The manner in which genetic information ought to be treated by law has been considered a

'looming area of medico-legal controversy'.

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As a unique set of data exposing a blend of

personal and familial interests, it raises 'new and profound questions with regard to the … legal

and moral obligations to disclose genetic information to at risk relatives'.

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While these

questions have not yet been of concern for Irish Courts, they have recently been litigated in the

UK case of ABC v St George’s NHS Healthcare Trust.

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Here, the High Court struck out a claim

for the right to be informed of a family member’s genetic disorder. The recent readmission of

ABC for trial by the Court of Appeal provides opportunity for these questions to be definitively

answered in the UK.

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The outcome of this case will likely be of significant influence for Irish

Courts going forward and thus it is important that attention is paid not only to the result of the

case, but to the reasoning behind it.

It will be argued that there should be a legally recognised right to be informed of a family

member’s genetic disorder. This right is best recognised through the creation of a legal duty on

clinicians to disclose same, under the tort law of negligence.

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This duty is ethically and legally

justified where its scope is specifically limited to identifiable people, at risk of treatable genetic

disorders. Section B will explore the ethical imperative for the recognition of the right,

appealing to principles of autonomy and utility. Section C highlights the flexibility of the

common law duty of confidentiality, such that the barrier it presents to the creation of such a

right is sidestepped. Section D provides a detailed, holistic exploration of the requirements for

* BCL International (UCC), LLM Candidate (University of Edinburgh). I am grateful to Deirdre Madden and to

the staff at the school of Medical Law and Ethics in the University of Edinburgh, for continuing t o inspire me

within the subject area. Further thanks to Cormac Hickey and to the Editorial Board for helpful comments o n an

earlier version.

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Dean Bell and Belinda Bennet, 'Genetic Secrets and the Family' (2001) 9 Medical Law Review 130.

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The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure, 'Professional

Disclosure of Familial Genetic Information' (1998) 62 American Journal Human Genetics 474.

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[2015] EWHC 1394.

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ABC v St George's Healthcare NHS Trust & Ors [2017] EWCA Civ 336.

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The legal duty t hat will be discussed t hroughout, in r ecognition of a right to be informed of the genetic

information of one’s family member, is a legal duty on the healthcare practitioner. Separate discussions on the

ethical and legal duties on the patient themselves are outside the scope of this paper.

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the successful creation of a duty of care in negligence law, through the lens of the proceedings

in ABC. It is submitted that failure to adequately consider proximity and foreseeable harm as

independent criteria, resulted in confusion between the existence of a right, and the scope of

that right. Finally, Section E will highlight the relevance of Human Rights Frameworks,

ultimately revealing the 'incremental' rather than 'giant step' that recognition of such a right

represents.

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B THE ETHICAL BASIS OF A RIGHT TO BE INFORMED

Our starting point in addressing the legal question is an exploration of the ethical principles

and resulting tensions that underpin it. Principles of autonomy, as in respect for one’s

independent self-governance; and utilitarian principles or the avoidance of harm, together

inform moral interests and subsequent duties in this context. When juxtaposed, these interests

and duties create problematic tensions.

I Moral Rights of the Patient

The aforementioned principles amount to the ethical (and legal) duty of confidence owed to a

tested patient in respect of their genetic information. Genetic test results are considered private

and sensitive information for a number of reasons. Owing to its centrality in what influences

one’s identity or self-image, self-perception, and self-confidence; it is obvious that a patient

would want to control access to this information.

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Gilbar further emphasises that this sensitivity

arises out potential feelings of guilt towards relatives or others, and implications in the realms

of employment and insurance.

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Principles of autonomy should therefore, rightly enable a tested

patient to control the flow of genetic information which stems from the testing she has

undergone. Non-disclosure can be articulated as an independent autonomous decision not to

inform.

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Moreover, the trust between doctor and patient that information will remain confidential

ensures that patients remain candid with their doctors, thereby seeking adequate medical

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ABC (n 3) [27].

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The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure (n 2) 478.

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Roy Gilbar, 'Patient Autonomy and Relatives’ Right to Know Genetic Information' (2007) 26 Medicine and Law

677, 679.

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Roy Gilbar, 'The Passive Patient and Disclosure of Genetic Information: Ca n English Tort Law Protect the

Relatives Right to Know?' (2016) 30 International Journal of Law, Policy and The Family 79, 80.