Confidentiality in Disarray: Should Doctors in Ireland Disclose Genetic Information to Patients' Relatives?
| Date | 01 January 2020 |
| Author |
22
Condentiality in Disarray: Should Doctors
inIreland Disclose Genetic Information to
Patients’ Relatives?
SARAH KELLY*
A. Introduction
Genetic information challenges the boundaries of the doctor-patient relationship
in a unique and unprecedented manner. Such medical developments pose complex
questions as to whether doctors should disclose a patient’s genetic information
to relatives, whether genetic data ‘belongs’ to the individual and as to why
condentiality of genetic information is justied. e capabilities of genetic testing
and diagnoses are evolving rapidly,1 enhancing the lives of patients whilst creating
ethical and legal dilemmas for the medical profession.
A core element of the therapeutic relationship is condentiality.2 Recent litigation
before the UK courts, ABC v St George’s Healthcare NHS Trust (‘ABC ’),3 highlights
the tensions caused by the shared nature of genetic information, which may have
implications for relatives of the proband.4 e growing prevalence of genetic
medicine suggests that such conicts will intensify in medical practice, and are
likely to be encountered by doctors in Ireland and further aeld.
is article seeks to respond to issues raised by the clash of interests in genetic
information. It will argue that a patient’s relatives have a right to be informed of
genetic conditions which may aect them. It further proposes that this would be
achieved by introducing a qualied duty, which obliges doctors to disclose genetic
* B.C.L.F. (UCC), LL.M. (LSE). e author would like to thank Professor Emily Jackson O.B.E.
for her advice and encouragement in writing about this subject, and Julia Hagan for her invaluable
comments on previous dras.
1 e largest clinical sequencing project in the world, Genomics England’s 100,000 Genomes Project,
is currently being undertaken in the UK and aims to create a new genomic medicine service for the
NHS. See further: Genomics England, ‘e 100,000 Genomes Project’
co.uk/the-100000-genomes-project> accessed 3 April 2020. See also: National Institute of
Neurological Disorders and Stroke, ‘Huntington’s Disease: Hope rough Research .ninds.
nih.gov/disorders/patient-caregiver-education/hope-through-research/huntingtons-disease-hope-
through> accessed 3 April 2020. Research is progressing towards nding a cure for Huntington’s
Disease.
2 Medical Council, Guide to Professional Conduct and Ethics for Registered Medical Practitioners (7th
edn, Medical Council 2009) 25.
3 ABC v St George’s Healthcare NHS Trust [2020] EWHC 455 (QB); ABC v St George’s Healthcare
NHS Trust [2015] EWHC 1394 (QB), [2017] EWCA Civ 336.
4 e aected individual through whom a family with a genetic disorder is ascertained.
Condentiality in Disarray 23
information to third party relatives. e key distinguishing feature of genetic
data is that it is capable of aecting, and predicting, the health of not only the
individual patient but other family members.5 e shared implications of such
data are juxtaposed with the individualistic concepts of condentiality and patient
autonomy, which dominate medical law.6 Unfortunately the Medical Council has
yet to address the dynamics created by genetic information. Consequently, without
guidelines on how to apply the myriad of legal and ethical sources which bind the
duty of condentiality, doctors are undermined in their role. Reference will be
made to the law and professional guidance in the UK, which are more developed
than that of Ireland, and hence of strongly persuasive value.7
It is unfair to subject doctors to the ‘amorphous and ill-dened duty’8 of genetic
condentiality in the absence of appropriate guidance to make such decisions. e
purpose of this article is to clarify the role of the doctor in relation to disclosure.
It will argue that the Medical Council should regulate the disclosure of genetic
information, by rstly creating a suitably qualied duty to family members, and
secondly establishing a nuanced and transparent framework, in the form of
professional guidance, which doctors may reference to ascertain whether their
obligations to such relatives are engaged in clinical genetics.
While it is recognised that there are multiple potential interests in genetic
information (for example, employers and insurance rms), the scope of this article
is limited to the family milieu.9 e structure of this paper is as follows: Part B will
explore the role of condentiality in the context of genetic information. It will be
argued that the classical autonomy justication for condentiality is insucient to
prevent disclosure. e alternative rationale, utilitarianism, seeks to maximise the
health for the most number of people. is, it will be contended, favours disclosure
of genetic information to at-risk relatives; Part C will identify the sources which
should inform a framework for disclosure of genetic information. It will argue that
these instruments may be interpreted to support disclosure of genetic data in certain
circumstances, in the public interest. e principle of condentiality has been
drastically aected by recent developments in the law, including the introduction
5 Royal Colleg e of Physicians, Royal College of Pathologists, British Society for Human Genetics,
Consent and condentiality in clinical genetic practice: Guidance on genetic testing and sharing genetic
information (2nd edn, 2011) vi.
6 Graeme Laurie, Shawn Harmon and Edward J Dove, Mason and McCall Smith’s Law and Medical
Ethics (11th edn, OUP 2019) 107.
7 Niamh Connolly, ‘e Prospective and Retrospective Eect of Judicial Decisions in Ireland’ in Eva
Steiner (ed), Comparing the Prospective Eect of Judicial Rulings Across Jurisdictions (Springer 2015)
33. Due to the small nature of the state, in which relatively few cases are decided, the law on certain
issues (such as condentiality) is less developed than the UK. e English law is a particularly
persuasive authority in Ireland, due to similar cultural dynamics and shared common law heritage.
8 Graeme Laurie, Genetic Privacy: A Challenge to Medico-Legal Norms (CUP 2002) 3.
9 For discussion of alternate interests in genetic information see: Aisling de Paor, ‘Regulating Genetic
Information – Exploring the Options in Legal eory ’ (2014) 21 European Journal of Health Law
425.
24
of the General Data Protection Regulation (‘GDPR’), an unprecedented decision
in Ireland, e Child and Family Agency v AA,10 which addressed a doctor’s duty of
condentiality and third parties, and the aforementioned ABC litigation; and Part
D will argue that the Medical Council should introduce a qualied duty to disclose
genetic information, to ensure that the appropriate balance is struck between the
patient’s right to condentiality and the health of aected relatives. It will further
outline the scope and factors which should inform such a duty.
B. Condentiality of Genetic Information
ere are both public and private interests in maintaining condentiality.11 is
section considers the unique nature of genetic information, which challenges the
traditional justications for doctor-patient condentiality. It will argue that the
distinct nature of such information is not congruent with the principle of patient
autonomy, and thus relies on utilitarian justications. is has implications for the
exceptions to condentiality, particularly disclosure to family members.
I. e Unique Nature of Genetic Data
Genetic information is simultaneously comparable with, and distinct from, other
health information.12 Both are revealed in a therapeutic setting and are personal
and sensitive in nature. Similar to genetic disorders, diagnoses of non-hereditary
conditions may indicate the presence of such a condition in another individual.13
Indeed, in ABC, Yip J rejected distinctions between genetic information and ‘other
information that reveals a risk to another’.14
However the distinctive features of genetic information suggest it should be
recognised as a separate category of health information.15 Genetic exceptionalism is
cumulatively justied.16 Not only does genetic testing of a patient reveal indicators
of an additional family member’s health, but also may imply the likelihood of future
health conditions. e predictive aspect of clinical genetics is a powerful medical
tool. Unlike infectious diseases, for example, ascertaining genetic information
10 e Child and Family Agency v AA & Anor [2018] IEHC 112 (‘CFA ’).
11 W v Egdell [1989] EWCA Civ 13.
12 For discussion of types and nature of genetic disease see: Laurie, Harmon and Dove (n 6) 202–
206.
13 Safer v Estate of Pack 677 A 2d 1188 (NJ Superior Court Appellate Division 1996). e Court
draws parallels between HIV and genetic conditions.
14 ABC [2020] (n 3) [184].
15 cf Lawrence O Gostin and James G Hodge Jr, ‘Genetic Privacy and the Law: An End to Genetic
Exceptionalism’ (1991) 40 Jurimetrics 21; Sonia M Suter, ‘e Allure and Peril of Genetic
Exceptionalism: Do We Need to Special Genetics Legislation?’ (2001) 79 Washington University
Law uarterly 669.
16 de Paor (n 9) 428.
Condentiality in Disarray 25
is not dependent on physical contact, as the proband and relatives are passive
recipients of biological factors. Awareness of risk may enable the proband’s relatives
to seek proactive treatment and inform their life choices, signicantly improving
their welfare.
While genetic exceptionalism is not expressly endorsed in professional guidance
or the law, the practice of sharing genetic information with family members is
encouraged17 and generally supported by patients.18 is paper is concerned with
the conicts which arise where the proband chooses not to do so. Consequently,
as the next section will explore, it is imperative to ‘recognise the limitations
of approaches which focus on the individual patient’.19 e unique nature of
genetic information aects the role of condentiality, a dynamic which Lowrance
characterises as the ‘quandary of genetic exceptionalism’.20
II. e Role of Condentiality
Condentiality protects the information we choose to share, based upon
expectations of trust and reliance in the doctor-patient relationship.21 e doctrine
predates genetic medicine, enshrined in the Hippocratic Oath. is section analyses
the distinction between the private and public interests in condentiality. It will
demonstrate that, in the context of clinical genetics, the public interest is more
persuasive due to the unique capabilities of such information. is, consequently,
alters the desired role of condentiality.
e principle of condentiality serves the patient’s fundamental right to privacy.22
ompson identies the three values implicit in condentiality as privacy, condence
and secrecy,23 each of which appeals to the patient’s interest in autonomy. It protects
the patient’s personal information, human dignity and choice.24 Essentially, the
principle of condentiality emphasises patient self-determination, by allowing the
patient to control the disclosure of their personal information. us the private
interest in autonomy strongly justies the protection of medical information.25
17 GMC, Condentiality: Good Practice in Handling Patient Information (GMC 2017) 36.
18 Sandi Dheensa, Angela Fenwick and Anneke Lucassen, ‘“Is this knowledge mine and nobody
else’s? I don’t feel like that” Patient views about consent, condentiality and information-sharing
in genetic medicine’ (2016) 42 Journal of Medical Ethics 174.
19 Royal College of Physicians (n 5) 2.
20 William W Lowrance, Privacy, Condentiality and Health Research (CUP 2012) 111.
21 Daniel J Solove and Neil M Richards, ‘Privacy’s Other Path: Recovering the Law of Condentiality’
(2007) 96 e Georgetown Law Journal 123, 125.
22 Lowrance (n 20) 33.
23 Ian E ompson, ‘e Nature of Condentiality’ (1979) 5 Journal of Medical Ethics 57, 57.
24 Deirdre Madden, ‘Empowering Health Information: Medico-Legal Issues’ (2002) 8 Medico-Legal
Journal of Ireland 7, 11.
25 Patient autonomy is increasingly protected in modern healthcare. See: Montgomery v Lanarksire
Health Board [2015] UKSC 11.
26
Yet, despite protecting private interests, condentiality appeals to broader societal
values and is ultimately maintained in the public interest.26 e principle promotes
health by encouraging those who require medical care to seek assistance.27
It facilitates trust between the doctor and patient on the basis that sensitive
information will not be revealed.28 is, in turn, enhances eective treatment by
ensuring that doctors are equipped with the requisite information. e utilitarian
function of condentiality, namely improving the health and welfare of society, is
imperative to the public interest.29
Genetic disorders should not be perceived as being merely of private concern. While
transmitted vertically and within the family, such disorders also possess a public
dimension: impact on society; consequential human suering; and economic
burden.30 As Bingham J noted in W v Egdell, condentiality may be overridden by ‘a
stronger public interest in disclosure’.31 ere is clearly a public interest in mitigating
the negative consequences of genetic disorders for the individual and society. By
examining the underlying rationales for the public and private interests in genetic
condentiality, it is clear the unique nature of genetic information aects the dynamics
of doctor-patient condentiality.32 Before exploring the relevant law, it is necessary to
consider the desired role of condentiality in relation to genetic information.
III. ualied Condentiality of Genetic Information
Both the private interest in autonomy and the utilitarian public interest provide
strong justications for protecting health information through the medium of
condentiality.33 Genetic information diers from other medical data, as do the
correlated rationales for maintaining, or breaching, condentiality. e role of
autonomy is contested by the distinctive nature of genetic data. ere are therefore
persuasive reasons for modifying the application of condentiality in the genetic
context, by reference to the public interest.
Traditional medical practices tend to perceive the individual patient to the
exclusion of all others.34 is version of condentiality was relied upon by the
26 W v Egdell (n 11).
27 Taraso v Regents of the University of California (1976) 551 P 2d 334.
28 W v Egdell (n 11).
29 Charles Ngwena and Ruth Chadwick, ‘Genetic Diagnostic Information and the Duty of
Condentiality: Ethics and Law’ (1993) 1 Medical Law International 73, 75.
30 Janet A Kobrin, ‘Condentiality of Genetic Information’ (1983) 30 UCLA Law Review 1283,
1312.
31 W v Egdell (n 11).
32 Conversely, the highly sensitive nature of genetics information, and its interpretative capabilities,
for the individual patient may be identied as exactly the type of data which ought to be protected
by in the doctor-patient relationship.
33 Laurie, Genetic Privacy (n 8) 214.
34 Royal College of Physicians (n 5) 1.
Condentiality in Disarray 27
Defendants in ABC (discussed below) whereby genetic information, like other
health information, was argued to pertain uniquely to the patient.35 e obstacle
presented by this perception, of genetic information ‘belonging’ to the patient,
is that protecting the patient’s private interest in autonomy directly aects the
autonomy of relatives, who are therefore ill-equipped to make their own informed
health choices. As such, Ngwena and Chadwick assert that a patient’s autonomy
does not justify protecting genetic information, due to the signicant consequences
for the autonomy of others.36 Autonomy is predicated on the perception of the
individual as the ‘moral chooser’.37 Yet, in the context of clinical genetics, the
consequences of non-disclosure are particularly severe, especially in relation to
conditions which are not yet physically visible. erefore the autonomy of one
patient should not necessarily supersede the autonomy of another.
It is within the space created by the aws of the autonomy rationale for genetic
condentiality that the concept of ‘relational autonomy’ provides an alternative
response. It envisages the development of patients’ autonomy ‘through social
embeddedness and engagement with others; recognising the impact of one
person’s choice on the autonomy of others’.38 is paper argues that the utilitarian
underpinnings of genetic condentiality favour a relational approach which entails
utilising such information to benet the optimal number of people.
e maxim of utilitarianism is welfare, which strives to bring the greatest good
(or health) to the greatest number of individuals.39 Condentiality achieves this
by, as outlined, encouraging patients to seek medical care. However in the context
of clinical genetics, the question arises as to whether health is best served by
protecting the individual patient, or sharing such information to benet others. In
the absence of autonomy as a decisive factor, taking into account the benets of
limited disclosure, condentiality should be qualied to improve the health of the
family unit.
Recognising the familial implications of genetic information requires reinterpreting
condentiality, through a utilitarian lens, to include a social dimension.40 To justify
disclosure in the public interest, transparency, proportionality and acceptability are
essential.41 Indeed, the Medical Council recognises exceptions to the principle in
35 Roy Gilbar and Charles Foster, ‘Doctors’ Liability to the Patient’s Relatives in Genetic Medicine’
(2015) 24 Medical Law Review 112, 115.
36 Ngwena and Chadwick (n 29) 76–77.
37 Graeme Laurie, ‘Recognising the Right Not to Know: Conceptual, Professional and Legal
Implications’ (2014) 42 Journal of Law, Medicine and Ethics 53, 55.
38 Dheensa, Fenwick and Lucassen (n 18) 174.
39 Mark S Stein, ‘A Utilitarian Approach to Justice in Health Care’ in Rosamund Rhodes, Margaret
Battin and Anita Silvers, Medicine and Social Justice: Essays on the Distribution of Health
(OUP2012) 47.
40 Roy Gilbar, ‘Communicating Genetic Information in the Family: e Familial Relationship as the
Forgotten Factor’ (2007) 33 Journal of Medical Ethics 390, 393.
41 Mark J Taylor, ‘Health Research, Data Protection, and the Public Interest in Condentiality’
(2011) 19 Medical Law Review 273.
28
certain circumstances: for the prevention of crime; to reduce exposure to serious
communicable diseases; and where failure to do so may expose others to a risk of
death or serious harm.42 A further specic category should be introduced, that of
genetic information.
Ireland provides an example of a jurisdiction where modication of the existing
regime is required. e Medical Council is in an ideal position to adopt a
progressive and nuanced response to the improved capabilities of genetic testing.
Not only does individualistic condentiality clash with mutually shared interests
in genetic information, the consequences of such juxtaposition imply the erosion
of one of the foundational justications for maintaining condentiality: the private
interest in patient autonomy.
Condentiality is qualied by both moral and legal obligations. Despite its dynamic
and multifaceted nature, there is no overarching law or conclusive professional
guidelines on genetic condentiality but rather numerous instruments, which do not
provide a satisfactory framework to answer the question posed by this article. e
following section explores the legal obligations of doctors who are confronted with
the decision of whether to disclose genetic information, and how such instruments
may be perceived to support the disclosure of information to family members.
C. Disclosure to ird Parties: Identifying the Correct Approach
e principle of condentiality and its underlying justications are not absolute.43
e principle is translated into modern terms by the Declaration of Geneva and
the Medical Council Guidelines.44 It is imperative that professional guidance
disentangles the complex web of ethical and legal sources which doctors are subject
to.45 ere is an array of legally binding sources. In particular, the common law
and data protection have evolved signicantly in recent years, underlining the
increasing pressure caused by conicting medical duties. e following discussion
explores the contextual and legal considerations which inform the disclosure of
genetic information, and the regulation thereof.
I. e Unenumerated Constitutional Right to Privacy
e instruments which directly aect condentiality, considered below, must be
applied in the context of the Irish Constitution, which enshrines an unenumerated
right to privacy.46 In Kennedy v Ireland, Hamilton P held that the right to privacy is
42 Medical Council (n 2) 27.
43 Emily Jackson, Medical Law: Text, Cases, and Materials (5th edn, OUP 2019) 468. Jackson posits
that ‘in a wide range of situations, the duty to respect condentiality is suspended or modied.’
44 Madden (n 24) 13; Medical Council (n 2).
45 Ngwena and Chadwick (n 29) 90.
46 Bunreacht na h’Eireann, Article 40.
Condentiality in Disarray 29
a fundamental personal right, which is qualied by the common good and subject
to public order and morality.47 While there has been no express consideration by
the courts as to whether this dictum extends to condentiality, Mills and Mulligan
assert that the ‘constitutional dimension to specically medical condentiality…can
hardly be doubted.’48 Indeed, this assertion was accepted by the Irish High Court
in Rotunda Hospital v Information Commissioner,49 which set out that the ‘common
good’, which qualies the unenumerated constitutional right, is synonymous with
the public interest. While the Constitution aords protection to condentiality,
it will yield in certain circumstances to protect alternative interests. Similarly, the
common law contains analogous limitations in the public interest.
II. Disclosure to Prevent ‘A Risk of Very Serious Harm or Death’
It is principally the common law duty, interpreted in light of broader obligations,
which inuences the disclosure of condential information.50 us the importance
of the CFA decision which addressed doctor-patient condentiality and duties to
third parties is signicant. e Irish High Court held that disclosure of condential
information may be justied to mitigate the risk of death or very serious harm.51
In CFA , the Court was presented with an unprecedented occasion to identify
the circumstances in which a doctor may breach the duty of condentiality for
the benet of a third party. e case did not concern genetic information, but
rather the HIV status of the Defendant. e CFA alleged that the Defendant (a
minor who was born with HIV) was having sexual intercourse with a girl who
was also underage and unaware of his condition. Drawing on UK and Strasbourg
jurisprudence, the Court adopted a reserved approach and found that, in the
particular circumstances, there was no duty to disclose such information to the
third party. It held that the test for breach of doctor-patient condence is whether
‘on the balance of probabilities, the failure to breach patient condentiality creates
a signicant risk of death or very serious harm to an innocent third party’.52 is
mirrors the UK General Medical Council (‘GMC’) guidance, which states that
disclosure of health information, in the absence of consent, may be justied in the
public interest if failure to disclose such information leaves others at risk of death
or serious harm.53
47 [1987] IR 587.
48 Simon Mills and Andrea Mulligan, Medical Law in Ireland (3rd edn, Bloomsbury 2017) 88.
49 [2009] IEHC 315.
50 Victoria Chico and Mark J Taylor, ‘Using and Disclosing Condential Patient Information and
the English Common Law: What Are the Information Requirements for Valid Consent?’ (2017)
26 Medical Law Review 51, 52.
51 CFA (n 10) [73].
52 CFA (n 10) [73].
53 GMC (n 17) 37.
30
As the sole judicial authority on disclosure of health information to third parties
in Ireland, the CFA test is indicative of the Court’s potential approach to the
disclosure of genetic data. However, it is contended that the test should not be
applied unilaterally to assess disclosure in the context of genetics, as it does not
account for the distinctive nature and implications of such information. Indeed,
the Court asserted that the ‘high bar to disclosure’ was signicant ‘particularly in
relation to preventing the spread of communicable diseases,’54 thus implying scope
for the test to be altered in alternative contexts.
ere are multiple aspects of the CFA test which do not align with the unique
nature of genetic information. Firstly, the risk of developing the condition is not
‘created’ by a doctor choosing to maintain condentiality, but as a result of natural
biological factors. erefore the harm must be perceived as, not the disorder
itself, but the lack of early access to treatment and self-determination. Causation
may be particularly dicult to establish in this context due to the multi-factorial
nature of genetic conditions and the absence of concrete evidence as to how the
claimant ‘would have acted’. us Gilbar contends that relatives may struggle to
prove causation, as the claim would ‘be classied as a failure-to-warn’ or as a ‘loss-
of-chance’ type of case.55 Additionally, the threshold for breaching condence is
somewhat ambiguous. While the risk of death certainly amounts to a ‘compelling
circumstance,’56 the criterion of ‘very serious harm’ is open to interpretation in the
context of genetics. Here the Court suggests that the harm must be balanced with
the interest in privacy, the individual third party at risk and the ‘public interest
in ensuring that the public at large’ has condence in the medical profession to
disclose sensitive details.57 It is argued that this tri-dimensional balancing exercise
is not directly applicable to genetic information, as it omits the public interest in
furthering health and welfare by disclosure of such data.
Despite the explicitly high threshold, the reference to ‘unsuspecting members of
the public’ suggests that the CFA test could be favourable to relatives,58 who are
passive recipients of genetic disorders. Unlike the third party in CFA, who Twomey
J found to have assumed ‘a certain degree of risk’ by engaging in unprotected sexual
intercourse,59 relatives of the proband do not actively aect the inheritance of
genetic conditions.
e decision further indicates that risk may be a relevant factor when considering
disclosure of genetic information. Ngwena and Chadwick posit that while risk is
54 CFA (n 10) [72].
55 Roy Gilbar ‘e Passive Patient and Disclosure of Genetic Information: Can English Tort Law
Protect the Relatives’ Right to Know?’ (2016) 30 International Journal of Law, Policy and the
Family 79, 94.
56 W v Egdell (n 11).
57 CFA (n 10) [74].
58 ibid [69].
59 ibid [71].
Condentiality in Disarray 31
not usually referred to in judgments, it is nonetheless an implicit factor,60 providing
an element of objectivity. e High Court found that there was a 0.04% chance of
HIV transmission where appropriate medication was taken, a level of risk it deemed
acceptable. is may be compared with genetic conditions, which to a certain
degree, present less variables than reliance on a minor’s ability to consistently take
medication. e hereditary condition of Huntington’s Disease (‘HD’), at issue in
ABC, carries a 50% chance of inheritance and thus a greater risk of likelihood to
cause harm. In contrast with HIV, there is no treatment.61 A further comparison
may be derived from the seminal USA case of Taraso v Regents of University of
California, which concerned a patient who disclosed his intention to kill an
identied third party.62 Here the risk analysis is also less reliable than in the genetic
context, where the likelihood is based partly on scientic evidence rather than
wholly medical opinion. It follows that the basis for disclosure in genetics would be
signicantly higher than in either the Taraso or CFA scenarios. However the rule
does not account for the nuances of genetic conditions, particularly where a third
party is at high risk, but there is no cure available.
Ultimately, the threshold established in CFA is ill-suited to clinical genetics,
compounded by issues of the identied harm and causation. Nonetheless there
are certain aspects of the judgment which should inform the regulation of the
disclosure of genetic information. is will be discussed in further detail below, in
relation to a proposed framework of obligations.
Applying the CFA rationale to genetic information highlights the ‘inevitable
tension between an individualistic model of condentiality’ and the ‘inherently
shared nature’ of clinical genetics.63 e case is suggestive of the Irish courts’
reserved and cautious approach to relaxing the principle of condentiality. It
does arm that, in certain circumstances, it is legally permissible to breach
condentiality and conrms that the public interest is a key factor in arriving at
such a decision. Whereas UK courts have directly considered the disclosure of
genetic information, the absence of regulatory response in this jurisdiction renders
the health care professionals in an ‘unsatisfactory state of legal limbo’.64
III. e ABC [2020] Case: A Duty to Undertake a Balancing Exercise
While Ireland lacks authority on disclosure of genetic information to relatives,
the English High Court recently grappled with the subject in ABC v St George’s
Healthcare NHS Trust [2020]. e case illustrates the impact of tort law on
60 Ngwena and Chadwick (n 29) 82.
61 HD is a hereditar y condition, with a 50% chance of transmission. It is a degenerative condition for
which there is, as of yet, no cure available. See also (n 1).
62 Taraso (n 27).
63 Jackson (n 43) 477.
64 ibid 480.
32
policy. Dove argues that this is not the correct medium to tackle the social policy
issues raised by the evolving importance of genetic information.65 However the
considerable inuence of negligence claims in medical practice and the breadth
attributed to policy considerations by the third limb of the Caparo test for creating
a novel duty of care cannot be disregarded.66 It is likely that ABC will have profound
implications for healthcare professionals in Ireland.67 Signicantly, the High Court
recognised a common law duty to take into account the interests of third parties,
in certain limited circumstances, in relation to condential genetic information.68
As noted by Nicols J, at rst instance, the facts of ABC are both brief and tragic.69
e patient was the Claimant’s father. Despite encouragement from the hospital,
he refused to disclose his genetic condition (HD) to his daughters. e Claimant,
who was pregnant at the time of diagnosis, was partaking in family therapy with
the doctors and her father to come to terms with her mother’s death. e clinicians
discussed informing the daughter, but decided upon respecting the patient’s right
to condentiality. However a doctor accidentally revealed the father’s condition
to the Claimant, who subsequently brought two claims against the hospital;
arguing that the doctors owed her a tortious duty of care and that failure to share
her father’s diagnosis breached her right to private life under Article 8 of the
European Convention on Human Rights (‘ECHR’). Consequently, the High
Court approached the issue of disclosure of genetic information from a tort law
perspective (asserting that Article 8 did not strengthen the claim).70
e claim was struck out at rst instance, however the Court of Appeal held
that the claim was ‘arguable’ and remitted the case for a full trial. e key issue
for determination by the High Court was whether it should recognise a novel
duty of care towards the Claimant. To establish an entirely novel duty of care to
the relatives of the proband, the Claimant was required to demonstrate the three
cumulative elements of the Caparo test: the harm must be reasonably foreseeable as
a result of the doctor’s conduct; there must be a relationship of proximity between
the claimant and defendant; and it would be fair, just and reasonable to impose
such a duty.71 Mitchell et al assert that the third limb provides the greatest scope for
argument in relation to a potential duty of care to genetic relatives.72
65 Edward S Dove, ‘ABC v St George’s Healthcare NHS Trust and Others: Should there be a right to
be informed about a family member’s genetic disorder?’ (2016) 44 Law and the Human Genome
Review 91, 93.
66 Caparo Industries plc v Dickman [1990] 2 AC 605.
67 Connolly (n 7) 33.
68 ABC [2020] (n 3) [189].
69 ABC [2015] (n 3) [1].
70 ABC [2020] (n 3) [254]. See also: Mills and Mulligan (n 48) 85. While the common law exerts
particular inuence on the doctrine of condentiality, it is important to note that it represents one
aspect of a doctor’s obligations.
71 Caparo (n 66).
72 Colin Mitchell and others, ‘A Duty to Warn Relatives in Clinical Genetics: Arguably “Fair Just and
Reasonable” in English Law’ (2016) 32 Journal of Professional Negligence 120, 122.
Condentiality in Disarray 33
Having addressed the rst two limbs of the test, Yip J held that it was fair, just
and reasonable to impose a legal duty on healthcare professionals to carry out a
balancing exercise between the interests of the patient and the aected third party,
and to act on the outcome of such considerations.73 Such a duty will be discharged
where this assessment is conducted in accordance with professional guidance. It
does not oblige disclosure of genetic information, but rather imposes a duty to
consider the competing interests in such data.74
While ABC represents a step towards the alignment of the law and GMC guidance,
the Court’s narrow focus will arguably have limited impact on disclosure of genetic
information to third parties. is is evident in the required degree of proximity
between the parties75 and the ‘considerable latitude’ aorded to clinicians in such
circumstances.76 Such proximity may prove a tenuous aspect of future cases, where
the aected party is not a patient, or in contact with the doctor, but is aected
by such information. Noticeably, the Court in CFA did not limit the scope of the
duty of care to an identiable third party.77 However, in the context of genetics, the
‘proximity’ requirement is a powerful tool in elucidating the appropriate scope for
the doctor’s responsibilities, discussed below. Similar to CFA , the concept of ‘harm
as a result of the doctor’s conduct’ does not refer to the genetic disease itself but
rather the damage caused as a result by a lack of requisite information to make fully
informed decisions. Such data may enable family members to seek preventative
measures or treatments that they would otherwise not have known to access.78 As
previously outlined, causation in such circumstances may be dicult to establish
depending on the facts. e Claimant in ABC argued that the doctors owed her
a duty of care to provide her with information relating to her father’s diagnosis
of HD to enable her to make decisions in relation to her reproductive rights, but
failed to establish a breach of duty or causation.
In Smith & Anor v University of Leicester NHS Trust, McKenna J held that a
doctor’s duty of care does not extend to the patient’s second cousins in relation to
genetic information.79 e distance between the parties was greater in a physical
sense and in terms of awareness of existence than in ABC.80 is approach to the
relationship of proximity is plausible. First degree relatives (such as siblings and
next of kin) present the highest likelihood of genetic similarity and therefore have
73 ABC [2020] (n 3) [189].
74 ibid [193].
75 ibid [196].
76 ibid [193].
77 is may be due to the manner by which HIV is transmitted, which requires physical contact, thus
facilitating identication of aected parties.
78 Anneke Lucassen and Roy Gilbar, ‘Alerting Relatives about Heritable Risks: e Limits of
Condentiality’ (2018) 361 BMJ 1409, 1410.
80 Colin Mitchell and others, ‘Exploring the potential duty of care in clinical genomics under UK
law’ (2017) 17 Medical Law International 158, 177.
34
the strongest interests in accessing genetic information.81 As such, the introduction
of a new obligation to genetic relatives should be limited to rst degree relatives.82
Turning to the third element of the Caparo test, whether it would be fair, just
and reasonable to impose the novel duty, Yip J conned her considerations to the
present case by asserting it is not for the Court ‘to attempt to dene the limits of
any duty of care’ owed by doctors to third parties.83 us the High Court did not
focus on the broader policy arguments, as raised in the Court of Appeal. Chico
identies three overarching concerns in relation to the proposed duty: the impact
of such a duty on the doctor-patient relationship of trust and condence; doctors
would have no way of knowing who should be informed and would thus be exposed
to extra liability; and that cumulatively these concerns would be burdensome on
doctors, resources and time.84 Undoubtedly the consequences of the ABC decision
will impact the role of health care professionals.
e social dimension of the third limb of the novel duty test appeals to the public
interest. Unfortunately, the balancing exercise proposed by Yip J does not account
for this public interest in disclosure, or indeed the utilitarian values which inform
the role of condentiality in the context of genetics. Rather, the Court considered
the issue exclusively within the boundaries of the doctor-patient relationship,
omitting the ‘views of the ordinary people’.85 While Gilbar and Foster argue that
the Court of Appeal adopted a relational autonomy approach by acknowledging
the implications of a decision made by one individual on signicant others,86 it did
not wholly endorse disclosure to members of the family unit in the public interest.
Similarly, while not emphasising the public interest, the High Court recognised a
common law duty, which runs ‘parallel’ to the professional obligations enshrined in
GMC guidance and aligns with the traditional standard of care principles.87
is article argues that the public interest is reected by ‘progressive familial
interpretation’, as endorsed by professional guidance and in genetic clinical
practice, rather than reliance on autonomy and individualistic perceptions.88 While
the High Court in ABC relies on such guidance and attempts to account for the
realities of clinical genetics, it does so by juxtaposing conicting private interests
in the absence of public interest considerations and values. Arguably, the latter
elements are imperative in the evolution of the doctor-patient relationship.
81 Laurie, Genetic Privacy (n 8) 121.
82 Michael Fay, ‘Negligence, Genetics and Families a Duty to Disclose Actionable Risks’ (2016) 3
Medical Law International 115, 134.
83 ABC [2020] (n 3) [163].
84 Victoria Chico, ‘Non-Disclosure of Genetic Risk: e Case for Developing Legal Wrongs’ (2016)
16 Medical Law International 3, 15.
85 ibid 16.
86 Roy Gilbar and Charles Foster ‘It’s arrived! Relational Autonomy Comes to Court: ABC v St
George’s Healthcare NHS Trust [2017] EWCA 336’ (2018) 26 Medical Law Review 125, 131.
87 ABC [2020] (n 3) [261]; Bolam v Friern Hospital [1957] 1 WLR 582; Bolitho v City and Hackney
Health Authority [1998] AC 232.
88 Chico (n 84) 20.
Condentiality in Disarray 35
Both CFA and ABC reect the evolution of the common law of condentiality
in recent years. While inuential, additional instruments play a signicant role in
the disclosure of genetic information. e following section analyses the GDPR,
which directly impacts the disclosure of genetic information, and should therefore
be taken into account by the professional guidance.
IV. e ‘Shared’ Personal Data Conundrum
Given the trend of digitalisation of health records systems, the most recent GMC
guidance on condentiality is GDPR orientated.89 is reects the increasingly
signicant role of data protection in medical practice, which aims to protect the
fundamental right to the protection of personal data.90 is explicitly includes
genetic data.91 e Regulation applies to the processing of personal data, which
encompasses data used in patient care92 and, importantly, the disclosure of
information to third parties.93 It characterises genetic information as sensitive
personal data, subject to stringent processing requirements.94
Despite the unequivocal inclusion of genetic information within the remit of the
GDPR, its application is questionable as it fails to comprehend the implications
of genetic data for multiple parties and the dynamics created by conicting
interests.95 e denition of personal data envisages that such information ‘relates’
to an individual, by content, purpose or eect.96 Under such a denition, genetic
information relates to multiple individuals, particularly by reference to the third
criterion. is clashes with the GDPR’s perception of the autonomous natural
person, to whom such data uniquely pertains.97 e tension between relational
autonomy and the focus on the individual data subject demonstrates that the
GDPR is one of several sources which informs the doctrine of condentiality,
rather than providing a panacea solution.
89 Catherine Stanton, ‘Patient Information: To Share or Not to Share?’ (2018) 26 Medical Law
Review 328. Similarly to the GMC, although in less depth, the Medical Council references the
relevance of the Data Protection Acts 2003–2018 (Ireland), see: Medical Council (n 2) 48.
90 GDPR , recital 1.
91 GDPR , article 4(13).
92 Becky McCall, ‘ What does the GDPR mean for the medical community?’ (2018) 391 e Lancet
1249, 1250.
93 GDPR , article 4(2).
94 GDPR , article 9(2).
95 Article 29 Data Protection Working Party, ‘Working Document on Genetic Data’ (2004) 1218/03/
EN WP 91, 9 mendation/
les/2004/wp91_en.pdf> accessed 3 April 2020. (‘Art 29 WP’). Art 29 WP recognised the
existence of ‘a new, legally relevant social … biological group’ which is not reected by the GDPR.
96 Article 29 Working Party, ‘Opinion 4/2007 on the concept of personal data’ (2007) 11.
97 Mark Taylor, Genetic Data and the Law: A Critical Perspective on Privacy Protection (CUP 2012) 7.
36
While the GDPR may be of limited value in deciding whether to share genetic
information,98 it is an authoritative source on how such information should be
disclosed. It claries that in the absence of consent, disclosure may be acceptable for
medical purposes.99 e Information Commissioner’s Oce suggests that sharing
information in the absence of consent, which reveals information about another
individual, may be possible where it would be ‘reasonable’ to do so. is depends on the
type of information, the duty of condentiality and the relevance of express refusal.100
Where possible, such data should be anonymised to reduce the friction between
conicting interests, and protect the right to privacy of the patient.101 Disclosure must
comply with the data processing principles which require that the processing be lawful,
fair and transparent. It must further comply with the purpose limitation and disclose
the minimum amount of data possible. e doctor must demonstrate accountability,
and ensure the condentiality and integrity of such information where possible.102
Despite the inherent limitations of the GDPR in terms of balancing competing
interests in personal data, whether a data subject should be conceived as a ‘third
party’ and the consequences for the public interest,103 data protection law should
undoubtedly be included in a framework for the disclosure of genetic information
as it informs how sensitive data should be shared between parties. In addition to
the fundamental right to data protection, the ECHR must also be considered when
deciding whether to breach condentiality.
V. e Inuence of Human Rights
ECHR supports the evolution in medical practice from the need for a condential
relationship, to ‘the underlying values that support respect for private life – values
based on privacy and personal autonomy’.105 Arguably, this extends to the rationales
which inform genetic condentiality, identied in Part B, and the disclosure of
such data. Article 8 protects the right to private and family life yet similar to the
Constitution, data protection and the common law, it contains limitations and is
thus far from absolute.106
98 Laurie, Harmon and Dove (n 6) 181.
99 GDPR, article 9(2)(h).
100 Information Commissioner’s Oce, ‘Right of Access’
guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/individual-
rights/right-of-access/> accessed 3 April 2020.
101 Data Protection Commissioner, ‘Guidance Note: Guidance on Anonymisation and Pseudonymi-
sation’ (2019) dataprotection.ie/sites/default/les/uploads/2019-06/ 190614%20
Anonymisation%20and%20Pseudonymisation.pdf> accessed 3 April 2020.
102 GD PR, article 5.
103 Art 29 WP (n 95) 8.
104 e Convention is incorporated into Irish law by the European Convention on Human Rights
Act 2003.
105 Laurie, Harmon and Dove (n 6) 173.
106 Mills and Mulligan (n 48) 89.
Condentiality in Disarray 37
Condentiality is, in eect, an extension of privacy.107 Despite the dismissal of
Article 8 in ABC as ‘an aerthought,’108 private life includes not only the right to
control personal information but also physical and moral integrity, and freedom to
develop one’s personality and relationships.109 e Court was ‘unconvinced’ that the
Convention adds to the common law, or could provide an alternative basis for the
action.110 us Yip J did not entertain the potential conceptual limits of privacy, but
rather noted that the interference with Article 8 was justied and proportionate.111
Gilbar and Foster argue that ABC presented an opportunity for the Court to
engage with Article 8 to promote ‘the important social goals of eliminating or
reducing risk of developing hereditary diseases and their consequential damage’.112
Indeed, the wording of Article 8 invites a more holistic consideration of disclosure
of condential information as the protections aorded by Article 8 are ‘reinforced
by other and wider considerations of the public interest’.113
In Z v Finland, the Strasbourg Court described ‘respecting the condentiality of
health data’ as a ‘vital principle’, crucial for maintaining condence in doctors.114
However it is possible that disclosure may be justied under Article 8(2).
Disclosure, or interference with Article 8, must be necessary in a democratic society,
pursue a legitimate aim and be by proportionate means.115 Arguably, implementing
measures which improve public health and utilise scientic advances respond to a
pressing social need, with instruments such as the GDPR and ethical guidelines
ensuring adequate protection. e potential caveat to disclosure is that Article 8
protects both privacy and the family. us it may be suggested that disclosure of
genetic information interferes with the protection of family life, due to its potential
to negatively aect family dynamics. However, the public interest in maximising
health provides a legitimate aim to justify such interference.
e Irish High Court’s reliance on the Z case in CFA is indicative of the inuence
of Article 8 on the law of condentiality in Ireland. While the Strasbourg Court has
not specically addressed genetic information in the context of the Convention, a
duty to disclose, imposed by the professional regulators may be provided for by the
breadth of Article 8(2). It aords professional guidelines an opportunity to shape
condentiality in a more holistic manner, which accounts for societal values.
107 Bjorn Ketels and Tom Vander Beken, ‘Medical Condentiality and Partner Notication in Cases
of Sexually Transmissible Infections in Belgium’ (2012) 20 Medical Law Review 399, 402.
108 ABC [2015] (n 3) [31].
109 Laurie, Genetic Privacy (n 8) 249.
110 ABC [2020] (n 3) [254]; ABC [2017] (n 3) [65].
111 ABC [2020] (n 3) [257].
112 Gilbar and Foster ‘Doctors’ Liability’ (n 35) 119.
113 Stone v South East Coast Strategic Health Authority [2006] EWHC 1668 (Admin) [44].
114 Z v Finland (1998) 25 EHRR 371 [95].
115 ibid [94].
38
As discussed, there are multiple sources of condentiality which inform a doctor’s
obligations in relation to genetic information. Each of these creates scope, either
directly or indirectly, for disclosure in the public interest. e public interest, in
the context of clinical genetics, favours a qualied case for disclosure. e Medical
Council should clarify these obligations in genetic-specic obligations and guidance.
D. A Proposal for Medical Council Guidelines on Condentiality
of Genetic Information
Condentiality, in the absence of specic guidance, is in a state of disarray. e
obstacle faced by professional regulators is the identication of the boundary
between clarity and exibility.116 Furthermore, the kaleidoscope of family dynamics
and subjectivity of medical condentiality is not conducive to strict, one-size-ts
all rules in the context of clinical genetics.117
e following sections will assess how ethical and legal considerations, as outlined,
can serve the public interest in relation to disclosure of genetic information.
e Medical Council must respond to the evolving dynamics created by genetic
information, scientic advances and shis in the law. is should comprise two
elements: a limited duty to disclose genetic information to family members, and
an accompanying framework which claries when such a duty is engaged. As a self-
regulating body, the Medical Council is in the ideal position to respond eectively
to tendencies in medical practice,118 and adopt a comprehensive approach, not
conned by the boundaries of tort law as before the courts in ABC.
I. Discretion or Duty?
While the benets of sharing genetic information in the familial context are widely
recognised, and encouraged,119 the means by which this should be achieved in the
absence of consent are strongly contested. Doctors’ obligations are undoubtedly
engaged where disclosure is justied. e question arises as to whether the public
interest in qualied disclosure would be best achieved by creating a professional
discretion or duty to third party relatives.
e complexity of this issue is highlighted by foreign authorities, which fail to
provide a mutually accepted approach. Parallels exist between USA jurisprudence
116 Robert Baldwin, Martin Cave and Martin Lodge, Understanding Regulation: eory, Strategy
and Practice (2nd edn, OUP 2012) 142–146. Self-regulation may be criticised on the basis of
accountability.
117 Dove (n 65) 109.
118 Baldwin, Cave and Lodge (n 116) 140.
119 GMC (n 17) 36.
Condentiality in Disarray 39
and the facts of ABC.120 In Safer v Estate of Pack, the Superior Court of New
Jersey decided that a ‘duty to warn’ existed to warn the daughter who was at risk
of harm from a genetic condition of the doctor’s patient.121 However, the Court
found that there was essentially no distinction between infectious and genetic
diseases, thus holding that the duty to disclose genetic information logically
followed that in relation to infectious disease. is approach conicts with genetic
exceptionalism.122 A more reserved approach was adopted in Pate v relkel.123 e
Supreme Court of Florida found that a duty to warn the children of a patient about
genetic risk was satised by warning the patient. ese two cases demonstrate
the judiciary’s cognisance of the evolving nature of condentiality and doctors’
correlated duties. Such sources are likely to prove persuasive in the Irish context in
the absence of precedent, not in terms of the rationales which were relied upon to
reach the conclusions, but rather the conclusion in itself.
Proposals on how to encourage disclosure of genetic information range from
introducing a more relaxed ‘ethic of care’124 to imposing liability on the patient.125
Weaver proposes the former normative ethic whereby decisions about disclosure
should not abide by a formula or rational decision making, but the needs of the
aected individual, ‘while respecting the communal nature of shared genetics’.126
is construction reects the current arrangement (or lack thereof ) in Ireland,
with additional reference to the applicable laws. Doctors, aware that their duty
of condentiality is not absolute, adopt a default position of an ethic of care. In
England, this ethic is now legally binding as a consequence of ABC. e issue
with such an approach is that the lack of clarity of an ethic of care is inherently
insucient to guide doctors in relation to the complexities of clinical genetics.
A similar, yet more structured, method would be to provide doctors with discretion
to disclose, instead of a duty. Suter frames this conception as a conditional privilege
to warn of genetic conditions.127 A qualied privilege would limit the doctor’s
discretion, without imposing obligations. Similarly, Dove et al propose a duty to
‘consider’ disclosure to genetic relatives.128 However it is probable that in practice
120 Mitchell and others, ‘Exploring the potential duty of care’ (n 80) 176.
121 Safer (n 13).
122 e Genetic Privacy Act 1996 (New Jersey) (GPA) in eect overturned Safer, thus highlighting
the limitations of the decision. Cf Fay (n 82) 125. Fay argues that Safer is an ‘invaluable (if only
persuasive) precedent’.
123 Pate v relkel (1995) 661 So2d 278 (Fla 1995).
124 Meaghann Weaver, ‘e Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic
Relatives of Genetic Information’ (2016) Bioethics 181.
125 Gilbar, ‘e Passive Patient’ (n 55) 79.
126 Weaver (n 124) 185,186.
127 Sonia M Suter, ‘Whose Genes Are ese Anyway? Familial Conict Over Access to Genetic
Information’ (1993) 91 Michigan Law Review 1854, 1883.
128 Edward S Dove and others, ‘Familial Genetic Risks: How Can We Better Navigate Patient
Condentiality and Appropriate Risk Disclosure to Relatives?’ (2019) Journal of Medical Ethics
2020.
40
disclosure would be extremely rare. Not only is discretion unsatisfactory in terms
of consistency but also, and more signicantly, for justice.129 Doctors would be
unlikely to disclose, for fear that their professional discretion would be susceptible
to claims in negligence.130 In addition, the rule of law, which requires transparency
and foreseeability, necessitates that both patients and doctors will be aware of
the implications of their actions, and therefore of the consequences of genetic
information.
e preferable approach is to impose a duty on doctors towards relatives of the
patient specically in relation to genetic information. As genetic and genomic
medicine is becoming more integral to general medical practice,131 doctors’ duties
to family members must evolve to reect and incorporate advances in medicine.
is would guarantee appropriate disclosure, therefore enhancing the health of the
family unit and, more broadly, societal welfare.
Critics of creating a further duty for doctors, rather than discretion, argue it creates
a burden which is too onerous.132 is assertion is tenuous. As science and medical
treatment progress, doctors’ responsibilities must change to accommodate and take
advantage of such developments. If they do not, the benets of genetics would not
be realised.
e role of doctors should reect the public interest, which in certain circumstances
favours disclosure to further the health of third parties. While more onerous than
the obligation to consider as enumerated in ABC, the creation of such a duty
ensures that doctors will comply with their obligations. However, to avoid the
creation of an undue burden, the Medical Council should limit the duty.
II. Scope
e proposed duty is explicitly limited to genetic conditions. It endorses the
concept of ‘relational autonomy,’133 which reects the unique nature of genetic
information in a way which the traditional reliance on autonomy to rationalise
condentiality does not. As previously highlighted, this approach more accurately
mirrors the manner by which ‘real humans’ conduct their lives.134
However, identifying relatives as interested parties does not relieve the ambiguity
of condentiality in this context, but requires further qualication. Not only
129 Ng wena and Chadwick (n 29) 88.
130 Graeme Laurie, ‘e Most Personal Information of All: An Appraisal of Genetic Privacy in the
Shadow of the Human Genome Project’ (1996) 10 International Journal of Law, Policy and the
Family 74, 84.
131 Lucassen and Gilbar (n 78).
132 ABC [2020] (n 3) [177].
133 Gilbar, ‘e Passive Patient’ (n 55) 120.
134 ibid 191, 120.
Condentiality in Disarray 41
is genetic information a distinguishable category of health information, thus
incurring specic duties, such an obligation should be limited to the proband’s
rst degree relatives in a denite manner. Consequently the scope for breaching
condence is restricted, and the principle of condentiality in general healthcare is
not undermined.
e aforementioned ‘relationship of proximity’ criterion of the Caparo test is
relevant.135 While this was emphasised by Yip J in ABC, it was not expressly
considered in terms of the family unit, arising by virtue of the unusual factual
matrix and actual relationship between the Defendant and Claimant. e
identiable victim becomes increasingly remote as the family tree extends.136 First
degree relatives are generally identiable and present a higher degree of risk.137
Following Smith, the scope of a doctor’s duty to the third party should thus be
rened to include this circle of at-risk individuals, which aligns with the Medical
Council’s reference to disclosure in the public interest where it may protect ‘other
identiable people,’ or ‘the community more widely’.138 Furthermore, the identied
scope correctly balances the protection of third parties, without unduly burdening
the doctor. Having established the scope of the proposed duty, the next section
considers the relevant factors which establish when the duty is engaged.
III. A Framework to Guide Disclosure: e Relevant Factors
e purpose of the proposed framework is to enable doctors to assess when their
duty to third party relatives is engaged. Such a framework must rstly clarify the web
of applicable instruments, and secondly apply the derived rationale in the context
of clinical genetics. It should reect the potential of genetic information whilst
assuring the public that the principle of condentiality operates to emphasise patient
autonomy in relation to all other categories of health information. e benets of
disclosure of genetic information are not always axiomatic;139 thus disclosure which
does not bring identied benets to an interested party will not be justied. e
Medical Council must therefore recognise the utilitarian, public interest, value in
relational autonomy, informed by the relevant ethical and legal principles.
Importantly, not all medical information is equally sensitive or revealing.140 e
Royal College of Physicians et al (‘RCP’) caution that a proportionate response
135 Caparo (n 66).
136 Suter, ‘Whose Genes’ (n 127) 78.
137 Smith v University of Leicester (n 79) [29]. e Court held that to extend a doctor’s duty to second
cousins would fail the test of fair just and reasonable.
138 Medical Council (n 2) 27.
139 Ng wena and Chadwick (n 29) 84.
140 Alastair Kent, ‘Consent and Condentiality in Genetics: Whose Information is it Anyway?’
(2003) 29 Journal of Medical Ethics 16. See also: Lucassen and Gilbar (n 78) 2. e 0.1%
dierence in genetic codes leads to genetic sensitivity.
42
must distinguish between the sensitivity of dierent genetic information.141 e
duty should be restricted to sensitive genetic data. e legal bases for this framework
are rooted in the common denominator of the aforementioned sources: the principle
of condentiality is not absolute. Exceptions may be justied in the public interest.
e limits within which such a duty operates are dictated by the public interest
exception.142 Yet, what exactly is encompassed by the ‘notoriously vague’ concept of
the public interest is not expressly identied by the relevant sources.143
It is apt to rstly consider the most pertinent Irish authority on a doctor’s duty
to third parties. Applying CFA, the justication for disclosure is the avoidance
of harm. e CFA test indicates, as reected by the Medical Council guidance,
where disclosure of genetic information prevents serious harm or death it is
acceptable to breach condentiality. Yet the reality of genetic conditions is not
as simple or conducive to such a test. As outlined, the threshold is too stringent
for genetic disorders with the eect of excluding an array of genetic conditions
from disclosure, which may not amount to ‘serious’ harm. Further, it implies that
conditions where the disorder is not necessarily mitigated, for example HD, would
not merit disclosure.
us the CFA test does not account for the factors peculiar to genetic information.
ese unique features are imperative to policy considerations as to whether it
would be fair, just and reasonable to require disclosure. A Medical Council policy
on genetic condentiality must reect the public interest, which favours qualied
disclosure, in a manner which promotes the utilitarian values of condentiality.
Similarly, the unique nature of genetic information is relevant to Article 8(2),
for the protection of health. us the strict application of the CFA test may not
account for disclosure which is justiable. It should therefore not be applied in
isolation, but rather inform the Medical Council’s approach.
Considering the English position in relation to disclosure of genetic data, the
duty enumerated in ABC is pertinent in that it recognises the sharing of such
health information as legally permissible. It is indicative of the courts’ deference to
professional guidance in this context and thus the importance of comprehensive
Medical Council guidelines. However, the High Court’s approach fails to account
for the unique and shared nature of genetic information.
Where the proband’s genetic information reveals a signicant genetic condition
but the risk cannot be reduced as there is no treatment available; the relative has the
right to be informed. e information may aect their reproductive and lifestyle
choices. Similarly, where the genetic disorder is not severe, but may be treated, there
is a denite interest in being aware of such a condition. However, where a condition
is mild, with no cure and low risk, the relative has no right to be informed.
141 Royal Col lege of Physicians (n 5) viii.
142 Laurie, ‘e Most Personal’ (n 130) 84.
143 Taylor, ‘Health Research’ (n 41), 270.
Condentiality in Disarray 43
What results from these considerations is a scale of obligations, with increased
responsibility correlating with the severity of the genetic condition and availability
of treatment. Where treatment is available, it is imperative that the patient’s relative
be informed. Where it is not, the doctor must consider the severity and impact on
the relative’s life. It envisages a duty that is oen engaged by genetic conditions,
but limited to rst degree relatives. is must be balanced with the issue of how
the relative may react to such information, including the relative’s right not to
know where disclosure could harm the relative.144 Gilbar posits that the practice
of relational genetics requires doctors to engage in attempting to understand
the patient’s family dynamics before choosing to disclose, or withhold, genetic
information.145 is is arguably an impossible task, especially where the doctor
does not regularly interact with all family members. However it is likely that the
scenario where a family member would assert the ‘right not to know’ is rare,146 and
unless otherwise expressly informed by the relative’s health care professional, it is
reasonable for a doctor to assume that the relative would support increased choice
and autonomy in relation to her decisions.
us while aspects of the relational autonomy approach are appealing, a duty to
interpret family dynamics and emotional connections is overly burdensome. It
must thus be limited to specic factors, and to rst degree relatives. Rather than
attempting to understand family dynamics, a relational autonomy approach
essentially requires eective collaboration between doctors and hospitals. With
the transition to online medical records by the Irish Health Service Executive, this
is achievable by building on the existing practice of encouraging patients to share
genetic information.
In terms of the disclosure itself, the doctor must respect, insofar as possible, the
patient’s dignity and privacy. e GDPR is an essential guide when sharing
health information.147 Where possible, the identity of the proband should not
be revealed.148 Disclosure must comply with the aforementioned data processing
principles. In particular the ‘data minimisation principle’ requires that only
necessary information pertaining to the aected individual is revealed. is
protects the patient against arbitrary disclosures which intrude on her personal
life. While the boundaries are blurred by the individualistic conception of the ‘data
subject’ and genetic data which pertains to multiple parties, it can be presumed
that a doctor should only disclose the information necessary to assist the relative in
seeking treatment, within the dened scope of the framework.
144 For a detailed discussion of the right not to know see: Laurie, ‘Recognising the Right Not to
Know’ (n 37).
145 Gilbar, ‘Communicating Genetic Information in the Family’ (n 40) 391.
146 Dheensa , Fenwick and Lucassen (n 18).
147 BM A, ‘Access to Health Records’ (London May 2018) BMA 20180215, 6.
148 GMC (n 17) 13.
44
e Supreme Court in Montgomery indicated that the law should set the standards
required in professional practice.149 Yet the slow evolution of the law indicates
otherwise; in the context of genetics legal tools are outpaced by the ‘genetic
revolution’.150 In current practice, where doctors choose to exercise discretion
in favour of disclosure, their choices are undermined by the ‘creeping risk of
liability’.151 A duty to disclose, imposed by the Medical Council, would remedy this
by establishing disclosure as accepted practice in context of clinical genetics, whilst
balancing competing public interests.
E. Conclusion
e principle of condentiality should be applied contextually, to reect the
values of society and advances in medicine. It represents an evolution of the ethics
of healthcare.152 Where autonomy cannot be relied upon to justify maintaining
condence, it is utilitarian and welfare considerations which inform disclosure.
ese are expressed in the legal and ethical exceptions to condentiality in the
public interest. Indeed, the public interest in disclosure of genetic information to
at-risk relatives is clear: it may directly reduce the occurrence of such disorders.153
e unique nature of genetic information merits a tailored response. While this
is acutely necessary in Ireland, the GMC and RCP have already taken tentative
steps in this direction, albeit only to highlight the problems, without providing
solutions.154 is article has illustrated that a qualied doctors’ duty to rst degree
relatives of the patient should be introduced, in tandem with a transparent and
comprehensive framework to establish when exactly such a duty is relevant. Suitably
restricted and claried, this obligation would maximise health and welfare, without
undermining the principle of condentiality in healthcare.
e recognition by the Medical Council of genetic information as distinct, and
thus deserving of separate guidelines as a matter of policy, will impact subsequent
legal developments.155 It represents an essential step in clarifying doctors’ complex
obligations, currently in a state of disarray. is article serves as a note of caution to
the professional regulator; doctors should be enabled, rather than undermined, in
the context of clinical genetics. Both action and clarication are required on behalf
of the Medical Council to reect the public interest in eective healthcare.
149 Montgomery (n 25) [93] (Kerr and Reed LJJ).
150 Deirdre Madden, Medicine, Ethics and the Law (3rd edn, Bloomsbury Professional 2016) 344.
151 Dove (n 65) 110.
152 Ketels and Vander Beken (n 116) 401.
153 Kobrin (n 30) 1315.
154 GMC (n 17); Royal College of Physicians (n 5).
155 Laurie, ‘Recog nising the Right Not to Know’ (n 37) 61.
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