01 May 2011

Genetic Privacy

Past posts in this blog have noted concerns regarding weakening of Australia's national privacy regime through the Public Interest Determinations 11 and 11A under the Privacy Act 1988 (Cth).

Those concerns were reflected in a submission to the Privacy Commissioner, an entity that apparently decided to place its trust in the National Health & Medical Research Council, and in a co-authored article - 'Relatively Speaking: Genetic Privacy and Public Interest Determinations 11 and 11A under the Privacy Act 1988 (Cth)' - in 7 Privacy Law Bulletin (2010) that highlighted substantive concerns regarding both principle and practice.

I was thus delighted to see 'Doctors breaching patient privacy: Orwell redux' by David J Handelsman, Leo A Turner & Ann J Conway in 194(8) Medical Journal of Australia (2011) 403-404. For me it is more persuasive than 'Alerting Genetic Relatives to a risk of serious inherited disease without a patient's consent', the editorial by Graeme Suthers, Elizabeth McCusker & Samantha Wake at 385-386 in the same journal.

Handelsman et al comment that -
The other legal assault on privacy is highlighted in a recent update of the National Health and Medical Research Council (NHMRC) guidelines on medical genetic testing. These guidelines endorse a recent amendment to Commonwealth privacy legislation that widens the legal exemption allowing disclosure of patients’ genetic information to others, even against a patient’s wishes. Rarely, the situation arises where a patient is unwilling to inform relatives of a genetic test result that, in a doctor’s opinion, should be disclosed. Such disclosure was previously only permitted to resolve an imminent danger to another person’s health. After the previous exemption for imminent medical danger created a precedent, a recent amendment has removed the requirement altogether. In effect, this now creates genetic testing without consent by proxy — a situation where the relative may be informed, against the patient’s wishes, of the patient’s genetic status without the relative soliciting the information and possibly without wishing to know.

The arbitrary nature of this new standard is illustrated by its vague boundaries — only a "serious threat to life, health or safety" extending to “third-degree relatives” is required to override the patient’s denial of consent. The NHMRC guidelines even encourage not disclosing that the original genetic testing occurred, piling dishonesty upon breach of faith. The widened loophole creates an elastic legal excuse for the well meaning (but impatient) to breach individuals' privacy. This disavowal of patient confidentiality at a doctor's sole discretion has the net effect of allowing one individual's subjective, value-laden judgement, triggered by any remote threat to health or welfare, to override a patient's refusal of consent. Inevitably, unintended perverse outcomes should be expected — bringing to mind the legal maxim "hard cases make bad law".

In practice, this loophole will encourage the taking of the lazy path of legal coercion rather than gradual persuasion and ultimate acceptance of a patient’s decision. If forced disclosure is really required, such a momentous breach of a patient’s expressed wishes in the absence of genuine life-threatening circumstances should require approval from an independent legal tribunal, a standard well established for surgery on children whose parents refuse consent, or for sterilisation operations or other major elective procedures for those unable to consent.

... these legislative assaults on privacy reflect the fashionable belief in genetic determinism prevailing over any ethical, moral and legal constraints of everyday life. But ditching the trusted confidentiality of medical information for doctors’ convenience or to satisfy lobby groups permits arbitrary and damaging intrusion on personal liberty — the price of which remains eternal vigilance.