GLR Update: Australia Tackles Disclosure of Genetic Information without Consent

ClipboardLast fall, the Genomics Law Report reviewed new medical confidentiality guidance from the U.K. General Medical Council (GMC) and wondered whether the “public interest” was a sufficient justification for the disclosure of patients’ genetic information without their consent.

Since that time, Australia’s National Health and Medical Research Council (NHMRC) has tackled the same issue, publishing new privacy guidelines for health practitioners on the disclosure of genetic information (pdf).

In each case, the basic thrust of the guidance for medical practitioners is the same – there are certain circumstances where a patient’s genetic information may be disclosed against his or her wishes. However, the guidance from the GMC and the NHMRC does differ in several important respects.

First, while the GMC’s guidance applies to all doctors in the United Kingdom, the NHMRC’s guidance is restricted to Australian doctors in private practice. The NHMRC’s guidance also restricts its applicability to the disclosure of genetic information to living genetic relatives for medical purposes. Disclosures relating to unborn children (e.g., information related to embryos or carrier status), to legal but non-genetic relatives (e.g., adopted children or spouses) or for genetic research are all outside of the scope of the NHMRC’s guidelines. The GMC’s guidelines, on the other hand, contain no such specific limitations, referring only to the practitioner’s responsibility to balance the patient’s interests against those of others, and to disclose genetic or other information when justified in the public interest.

It is that “public interest” standard for disclosure that most clearly distinguishes the GMC’s guidance from the NHMRC’s. The NHMRC’s guidance is quite specific:

Use or disclosure of genetic information without consent may proceed only when the authorising medical practitioner has a reasonable belief that this is necessary to lessen or prevent a serious threat to the life, health or safety of a genetic relative.

(emphasis in original)

Dozens of pages of supplemental guidance help practitioners determine when this standard is satisfied and how to manage involuntary disclosure in the event that it should become necessary.

The GMC’s guidance, on the other hand, is far broader in its application and less detailed in its discussion. The discussion of “genetic and other shared information” is confined to a single page and disclosure is permissible whenever it is “justified in the public interest.” The “public interest” standard, in turn, encompasses much more than the prevention of series threats to genetic relatives, including (i) the prevention of communicable diseases or serious crimes, (ii) the furtherance of medical research and (iii) “education or other secondary uses of information that will benefit society over time.”

Narrower and more fully articulated than the GMC’s guidance, the NHMRC’s guidance arguably strikes a better balance between the harms produced by the unconsented disclosure of a patient’s genetic information and the benefits of that information for the patient’s genetic relatives. Whatever you think of the NHMRC’s guidance, however, permitting doctors to disclose genetic information against their patients’ wishes calls forth many of the same questions raised in Emily Sherlock’s original GLR piece.

In certain circumstances, genetic information possesses indisputable value to a patient’s genetic relatives, as well as individuals that are known to the patient but are not genetically related, including non-genetic family members or caregivers. Its disclosure may even operate to further the nebulous “public interest” referred to in the GMC’s guidance. As genetic information occupies an increasingly central role in our medical care and in our lives, policymakers and legislators worldwide must continue to carefully weigh the benefits of compelled disclosure against competing considerations, including, (i) the importance of patient autonomy, (ii) the genetic relatives’ right not to know certain information, (iii) the potential that individuals will forego valuable genetic testing if they fear their genetic privacy will not be respected and (iv) the difficulty of mitigating risks associated with the disclosure of genetic information.