Having a genetic test

When you are thinking about having a genetic test, you need to decide:

  • whether or not to have the test in the first place
  • who to tell about the test results
  • how to live your life with the information provided by the test
  • how much support you need to deal with the choices you must make, and the way you may have to change your lifestyle.

Your choices may affect you and your family. To make these choices, the following need to be considered:

What does the test result mean?

Will you definitely develop the disease you’ve been tested for?

Gene tests do not always provide a definite 'yes' or 'no' answer.

Or, perhaps you have an increased risk (predisposition) for developing a disorder? This means that you have a greater chance of developing a condition than other people around you, but it may never happen. However, if you find out that you do have an increased risk, this information may enable you to more closely monitor the condition, or make lifestyle choices to help prevent its development.

Choice

For some disorders, such as Huntington disease, gene tests are available, but there is currently no treatment or cure. In these circumstances, some people may choose to know if they carry the gene, while others may not. Results from the test can help people make choices for the future if the result of the test indicates that they will develop symptoms later in life. However, some people would prefer not to know if no treatment is available.

Testing can also reveal information to prospective parents about their risk of having a child with a genetic condition. The results of such a test provide couples with information to help them make decisions about having children.

Implications

Gene tests may have far-reaching effects. Understanding the possible implications of a gene test is an important step in the process. Gene tests can identify people who carry mutations in their DNA, but are unaffected by them. The results may only matter when the person has children.

Gene tests can affect more people than the one having the test. Discovering your own genetic make-up may reveal or rely on genetic information about close relatives who do not want to know or reveal this information.

It is also possible for gene tests to inadvertently disclose family secrets involving paternity or adoption.

Genetic counsellors are specifically trained to help people through the process of genetic testing.

For more information about genetic counselling in Australia, see www.genetics.com.au or http://www.genetichealthvic.net.au

Who would you have to tell?

Our understanding of human genetics is progressing at a phenomenal rate. But with this increased knowledge and potential for new diagnostic and therapeutic tools comes the question of an individual's rights.

If you had a genetic test, would you have to tell your employer? Your health insurance company? Your parents? Your children?

Over two years, community consultation sessions were held by the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee on these issues. From this public inquiry, a report on genetic testing and personal privacy was produced and presented to Parliament.

The report covers a number of topics, including how to regulate genetic privacy, discrimination and the use of genetic testing and information in employment.

For more information on the report into genetic privacy, go to: http://www.alrc.gov.au