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

AuthorJuliana Gleeson
PositionBCL International (UCC), LLM Candidate (University of Edinburgh)
Pages1-20
(2019) 18 COLR 1
1
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'.
1
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'.
2
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.
3
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.
4
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.
5
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.
1
Dean Bell and Belinda Bennet, 'Genetic Secrets and the Family' (2001) 9 Medical Law Review 130.
2
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.
3
[2015] EWHC 1394.
4
ABC v St George's Healthcare NHS Trust & Ors [2017] EWCA Civ 336.
5
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.
(2019) 18 COLR 2
2
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.
6
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.
7
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.
8
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.
9
Moreover, the trust between doctor and patient that information will remain confidential
ensures that patients remain candid with their doctors, thereby seeking adequate medical
6
ABC (n 3) [27].
7
The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure (n 2) 478.
8
Roy Gilbar, 'Patient Autonomy and Relatives’ Right to Know Genetic Information' (2007) 26 Medicine and Law
677, 679.
9
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.

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