The new genetics: is it mad science or modern miracles? (help us figure it out)

It is a rare day when the news media fails to contain some coverage of an exciting development or a worrying controversy (or both) arising out of genetic research and technology.

On the one hand, there is strong public support for breakthroughs promising better medical diagnosis and treatments, and for assisting with law enforcement (including identification of missing persons); on the other, there is some general fear about uncontrolled or ‘mad science’.

The Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) are conducting a groundbreaking inquiry, which aims to find a balance between encouraging advances in genetic science and technology, and protecting the public from loss of privacy and unfair genetic discrimination.

As part of this inquiry, the two agencies have released a community consultation paper, Protection of Human Genetic Information. The Issues Paper outlines a range of potential concerns about the use of human genetic information in areas such as medical research and practice; tissue banks and genetic databases; health administration; employment; insurance and superannuation; access to services and entitlements; law enforcement and evidence in court.

Is genetic information special?

For many years, doctors, employers, insurers and others have requested information about family medical information — much of which amounts to genetic information — to provide advice or make assessments about the future health of an individual.

Medical information already receives special treatment with regard to privacy laws and policies. One of the key issues for the inquiry is whether genetic information is so fundamentally different from other forms of health information that it requires a separate or special regime to regulate its collection, use and disclosure.

Some of the characteristics that may differentiate genetic information from other forms of health information include:

The science relating to genetic information is new and developing, increasing the possibility that genetic information may be inaccurate or subject to misinterpretation. Individuals may not always be able to be advised about the long–term implications of this information.

While each person’s genetic information is unique, it also can reveal information about — and therefore have implications for — that person’s parents, children, siblings and other relatives (and perhaps even people outside the family who are part of a common descent group, such as members of an ethnic group). Similarly, genetic information is capable of revealing ‘family secrets’, including information about paternity (or non-paternity), adoption, or the use of assisted reproductive technology.

The predictive nature of some genetic information means that disclosure may lead to unfair discrimination or other negative consequences for the individuals to whom it relates.

Every cell in a person’s body, with the exception of sex cells, contains all of his or her genetic code. Therefore, the testing of any biological sample can reveal the full complement of a person’s genetic information. There is potential for stored genetic samples to be re-tested as new tests are developed.

However, there also are strong arguments that genetic information is not fundamentally different from other sorts of medical information and does not merit special treatment. On this view, genetic information is neither distinctive nor unique in its ability to predict an individual’s future health, but indicates only a rough range of probabilities. Information about family history, lifestyle and environment (smoker or non-smoker, skydiver or race car driver, miner or office worker) and non-genetic test results (eg for high blood pressure, diabetes and cholesterol) also provide important clues to current and future health.