Genetic information and privacy code changes

Submission on proposed amendments to the Health Information Privacy Code - June 2007.

Earlier this year the Privacy Commissioner released for public comment a proposed amendment to the Health Information Privacy Code. The amendment proposed a number of changes including circumstances where genetic information might be shared by health professionals with other relatives of an individual. The submission from NZORD was solely in respect of the “genetic relative” amendments to Clause 3(1), and the “genetic information” clause to be added to Rule 11(2). Read a copy of the draft amendment and explanatory papers on the publications page of the Privacy Commissioner’s website. NZORD submitted:

NZORD accepts there are good grounds for considering such a change and agree with the approach of a specific threshold test of seriousness alone, for disclosure of genetic information, rather than a general change to the “serious and imminent” threshold test for other health information. We accept this on the understanding that it would be adopted only in exceptional circumstances and would not be a routine practice.

We raise one matter of concern that we think should be allowed for in the proposed amendment. That is the lack of detailed knowledge of genetics among many health professionals who have not undertaken specialist training in the topic. It is our view that the average GP, nurse or other community-based health practitioner, for example, would not have sufficiently detailed knowledge of matters such as inheritance patterns and penetrance, to make a well informed judgement about the risks to their patient’s genetic relative.

Given the current level of genetics education among health professionals it is likely that probably only those practicing as specialist medical geneticists, or other secondary level specialists in various medical disciplines (e.g. cardiac physicians in respect of heart disease), are likely to have sufficient detailed knowledge to make appropriate assessments that might lead to the sort of advice to genetic relatives that is contemplated by the amendment.

As it is expected to be an exceptional event that leads to any use of the proposed amendment, and because we are talking about things which are serious but are unlikely to be imminent, it may be wise to provide that the implementation of the rule on genetic information disclosure to a genetic relative, should occur only after the health professional has consulted an appropriately qualified colleague with appropriate post graduate training in genetics (unless of course the health professional already has that level of qualification themselves).

We refer you to the National Health Committee report on Molecular Genetic Testing in New Zealand, September 2003, for comments on the practitioner issues, the varying knowledge and competencies in genetic testing issues, and the suggestions of protocols to manage those risks. We think the current consultation would produce a better protection for all concerned, the patient, their genetic relative, and the practitioners involved, if a referral protocol is developed.

Yours sincerely,

John Forman
Executive Director