The Limits of Privacy: Genetic Information & The Family

1. 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

2. 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

3. 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?

4. 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? • TheMoral DutyOn Being A Samaritan, Luke 10:25-37 • The Legal DutyThe “neighbour” principle in Donoghue v Stevenson [1932] HL 562 • No Duty in Law to Rescue StrangersExample: Barrett v Min of Defence [1995] 1 WLR 1217

5. 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 lawrule: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.

6. 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

7. 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 dutyor obligation (i.e. no positive requirement to act), but simply adefence? Difference between the two.

8. Medical Council of Hong KongCode 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.”

9. 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?

10. 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.

11. 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?

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 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?

13. 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 ...

14. Discussion • Finally: • Autonomy andResponsibility for the Self and • The Right Not to Know

15. 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?

16. 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