The Third Asian Privacy Scholars Network Conference
Faculty Academic Conference Centre, 11/F, Cheng Yu Tung Tower,
Centennial Campus
The University of Hong Kong
8 – 9 July 2013
The Limits of Privacy:
Genetic Information & The Family
Terry KAAN
Faculty of Law, National University of Singapore
lawterry@nus.edu.sg
Privacy
No man is an island entire of itself; every man
is a piece of the continent, a part of the main;
if a clod be washed away by the sea, Europe
is the less, as well as if a promontory were, as
well as any manner of thy friends or of thine
own were; any man's death diminishes me,
because I am involved in mankind.
And therefore never send to know for whom
the bell tolls; it tolls for thee.
John Donne (1572-1631)
Meditations XVII: Devotions on Emergent Occasions
2
Life
X consults her physician Dr Z over worries about cancer in her family. X’s
mother died of ABC cancer at age 40. It has cut short the lives of 3 out of 4
of X’s maternal aunts. ABC cancer is very strongly associated with a
mutation in the ABCx gene, which is inherited and expressed only in the
female line. More than 80% of women with this mutation will develop ABC
cancer by middle age. Prognosis is very poor (<5% 1-year survival rate) from
Stage IV (the stage it is discovered in 95% of cases). But effective preventive
and prophylactic measures (including genetic testing, pre-emptive radical
surgery and very frequent screenings) can reduce the chances of contracting
ABC cancer and dying from it to almost negligible odds.
Test for ABCx on X prove positive. X decides to have pre-emptive surgery.
X has a sister, Y, who is a year younger. Dr Z suggests to X that she should
tell Y. X refuses point-blank: there is a long history of acrimony, and X has
broken off all contact with Y after a scene at their mother’s funeral. Dr Z
asks if she may then inform Y herself instead: X adamantly refuses: “You
have no right to interfere in family affairs – this is my private information”,
she says to Dr Z, “You are my doctor, not hers”. Y is not a patient of Dr Z.
What can, and what should Dr Z do?
3
Law I

On The Notion of A Duty
Is there a duty to prevent harm to others, if one is not
the source of the potential harm?
The Moral Duty
On Being A Samaritan, Luke 10:25-37
The Legal Duty
The “neighbour” principle in Donoghue v Stevenson
[1932] HL 562
No Duty in Law to Rescue Strangers
Example: Barrett v Min of Defence [1995] 1 WLR 1217
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Law II

The Physician’s Duty of Confidence
What is the legal basis of the duty of a physician’s duty
of confidence within the physician-patient
relationship? When might it not apply?

The general common law rule:
AG v Guardian Newspapers (No 2) [1990] 1 AC 109
a.k.a. The Spycatcher Case
Basically: if you are given information under
circumstances that the informant believes that the
information will be held in confidence, then the
recipient has a duty of confidence to the informant.
5
Law III
 But Are
There Exceptions?
Two Scary Stories:
 W. v Egdell [1990] Ch 359
 Tarasoff v Regents of the University
of California 551 P. 2d 334 (1976)
Supreme Court of California
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
Was Dr Egdell in breach of his obligation of
confidence to W.?

If you are a physician, what would you have
done?

Not a true legal privilege, balancing act between
competing public interests.
Disclosure in the Egdell situation not a legal duty or
obligation (i.e. no positive requirement to act), but
simply a defence? Difference between the two.

7
Medical Council of Hong Kong
Code of Professional Conduct (2009)
“1.4 Disclosure of medical information to third parties
“1.4.1 A doctor should obtain consent from a patient
before disclosure of medical information to a third party
not involved in the medical referral.
“1.4.2 In exceptional circumstances medical information
about a patient may be disclosed to a third party without
the patient’s consent. Examples are: (i) where disclosure
is necessary to prevent serious harm to the patient or
other persons; (ii) when disclosure is required by law.”
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Medical Council of Hong Kong Code again:
“1.4 Disclosure of medical information to third parties
“1.4.3 However, before making disclosure without the
patient’s consent a doctor must weigh carefully the
arguments for and against disclosure and be prepared to
justify the decision. If in doubt, it would be prudent to seek
advice from an experienced colleague, a medical defence
society, a professional association or an ethics committee.”
Is
this a professional direction?
Exemptions in s.59 HK Personal Data (Privacy)
Ordinance does not appear to cover situation
Legal effect? Liable if physician guesses wrong?
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Discussion

Do the Edgell or Tarasoff principles apply?
 X is not the source of the potential harm to Y. If A
acts (willfully or negligently) in such a way that B
(an innocent third party) could be harmed as a
result, then clearly A has a legal duty not to
engage in such acts (e.g. speed near a school, or
drink and drive): A has a duty not to harm others.
 The agent of potential harm to Y is Y herself. But
in the case of X and Y, the potential harm to Y
emanates not from X, but from the very fabric of
Y herself – her own genes. X is not a source of
harm to Y.
10
Discussion

Assuming you agree with the direction in the
Code ... who should have the primary
responsibility (and burden) of the duty?
 X is the sister of Y. Dr Z is a third party to Y – no
more legal connection than the driver of the bus
that she takes to work in the morning.
 If Dr Z is to burdened with a duty, what about the
clinical technician who confirmed the ABCx
positive result, the nurse who read it – should
they too be afflicted with the same duty through
their knowledge, and if X and Dr Z refuses to act?
11
Discussion

If you decide that Dr Z should tell Y against
the wishes of X, is this on the basis that:
 Dr Z has a duty to do so – she has no choice as a
doctor.
 Dr Z has a discretion to do so – she is entitled to
warn Y, but it is entirely in her discretion – in
which case, in view of the attendant risks,
probably more politic for her to keep quiet! Can’t
be sued that way – a moral hazard?
12
Discussion

If you decide that Dr Z should tell Y against
the wishes of X, is this on the basis that:
 Dr Z has a judgement to make – she may (in her
discretion) or must (no choice) warn Y after
weighing the public interest in disclosure against
the very real human right of X (her right to
privacy)? If the HKMC or the judge disagrees
with her?
 What if penetrance of the gene is uncertain, or is
only between 20% - 30%? 10%? 5% Poor Dr Z ...
13
Discussion
 Finally:
 Autonomy and
Responsibility for the Self
and
 The Right Not to Know
14
No Man Is An Island, Redux
What is the basis of
the moral worth
and the social worth
of the notion of privacy?
What are the values of our community, and our culture?
What would we (as individuals) and we (as a community)
think right?
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The Third Asian Privacy Scholars Network Conference
Faculty Academic Conference Centre, 11/F, Cheng Yu Tung Tower,
Centennial Campus
The University of Hong Kong
8 – 9 July 2013
The Limits of Privacy:
Genetic Information & The Family
Terry KAAN
Faculty of Law, National University of Singapore
lawterry@nus.edu.sg