It has long been the case that when one seeks insurance one has a duty under the Insurance Contracts Act 1984 to disclose to the insurer all relevant information for the insurer to used to determine whether to accept the risk of the particular policy and to set an appropriate premium for it. Yet with genetic testing a person may manage propensities and avoid a risk, so raising tension between Insurance Disclosure Obligations -v- Medical Privacy.

Advances in medical technology, particularly genetic testing, in recent times now allows an ordinary person to obtain his or her medical genetic information and to use that information in context of their own long-term health and lifestyle management and medical welfare.

Information Now Available

These tests allow identification of predisposition to various inherited and non-inherited conditions.

Without going into any significant detail, common disease predispositions which can be identified include Coeliac Disease, Depression, some forms of cancer and Alzheimer’s disease.

Obtaining relevant test results can be used by people better to managed lifestyles variously to delay onset of, manage and/or even to avoid or cure some diseases.

There are many issues surrounding genetic medical testing including medical, psychological and legal.

This note seeks only to flag concerns about two particular legal issues likely to arise with increasing frequency.

To disclose or not to disclose?

That is, to what extent knowledge of genetic test result dealing only with a propensity towards, as opposed to a diagnosis of a particular disease, should in all cases attract the obligation to disclose to insurers under the Insurance Contracts Act.

The reality is that insurers would be permitted to use the relevant information to decide whether to accept an insurance risk and/or to impose a loading on the relevant premium without, by doing so, breaching the Disability Discrimination Act 1992 (Commonwealth) provided it is used as part of consideration of substantiated statistically relevant data.

To the extent that an insurer uses information to load a premium, should not the intending insured who acquires the genetic information also be permitted to assert that they, by adopting a proactive lifestyle to deal with a genetic propensity, that they should be entitled to have the adverse loading proportionately rebalanced?

In short, why should people who adopt a proactive stance to managing their long-term health be penalized, by potentially becoming uninsurable or insurable only at significant additional cost, when, at the same time, they have adopted a lifestyle and health regime aimed at avoiding the triggering of the disease to which they may be predisposed?

Who Owns Data and What Can Owner Do With It?

When one has genetic testing done, there arises the issue of who owns the data in the report and what can be done with it?

From what I have seen so far, medical investigators/reporters tend to be insisting on ownership of the data behind a report and reserving the right to use it for their own research and other purposes. This, of course raises significant issues of consent and privacy which may or may not be acceptable to some people who want to know about their own propensities.

The text of the paper is only a summary and discussion of particular facts and principles. It is not to be taken as legal or commercial advice as to any particular factual circumstances.