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FAQs

Making the right connections since 1988

Genetic Alliance Australia is a tax-deductible registered charity, was formed in 1988 to provide peer support and information for individuals and families affected by a rare genetic condition/rare disease.

The diagnosis of a genetic condition in a family member, particularly a child, places enormous stress on a family. Families may feel the need for personal support offering a specialised understanding of their particular condition. Whilst there are support groups established for a number of genetic disorders within the Australasian region, GA may provide the only contact point for families affected by rare conditions.


What can Genetic Alliance Australia do for me?

GA will endeavour to facilitate contact with another family/individual affected by the same, or similar conditions, and/or provide information about an overseas support group.GA also provides a Peer Support and Information Officer who deals with enquiries and facilitates ongoing support for individuals, families, health professionals and other interested groups.

  • GA Aus has a database of over 1400 predominantly rare genetic conditions/ rare diseases and has a Rare Treasures support group which has over 250 very rare chromosomal abnormalities
  • Resources relating to education, respite care, medical services, allowances, and other helpful organisations
  • Information seminars
  • Local and regional contacts
  • Regular newsletters

What is a genetic condition?

A gene or chromosome fault can result in a genetic condition. Genes are the instructions that determine physical characteristics such as height, hair and eye colour, strength of our bones and the correct functioning of our bodies. Genes are located on chromosomes inside the cells of our bodies. A genetic condition can run in families, but may occur without a previous family history.

Is there a support group for my genetic condition?

Take a look at our list of support groups in our list of genetic conditions, or contact Genetic Alliance on +61 2 9295 8359.

List of genetic conditions

What funding is available?

Centrelink provides funding for carers and people living with genetic conditions.

Click here to visit the Centrelink website

How many families in Australasia are affected by a genetic condition?

■ Currently it is estimated one person in ten will be adversely affected, directly or indirectly, by a genetic problem during their lifetime

■ About half of all miscarriages are caused by chromosomal abnormalities

The completion of the full human genome sequence, in February 2001, refined the estimated number of genes in the human genome to around 30,000. Interestingly, the number of genes needed to make a human being is only double the number needed for apparently much simpler animals, such as fruit fly or a worm!

Around 22,000 genes have been identified to date. Almost 14,014 of these have been mapped to their chromosomal location and of these around 1,639 genes have been associated with human genetic disorders.

The list is increasing every year and includes such disabilities as blindness, cystic fibrosis, muscular dystrophy, haemophilia, breast cancer and problems with intellectual and physical development.

At present genetic testing is available in Australasia for approximately 300 disorders. Some tests are for genes involved in rare congenital disease of childhood. Some are for single gene disorders that manifest in the adult years.

Genetic Counselling FAQs

The following has been republished from the Human Genetics Society of Australasia - http://www.hgsa.org.au/asgc/frequently-asked-questions

HOW CAN I ARRANGE A GENETIC COUNSELLING SESSION?
In various regions of Australia and New Zealand, clinical genetics units and/or services are administered by public and private health facilities and may function quite differently. Most clinical genetics services require a letter or phone call from a referring health professional. Written referrals are usually preferred, because this facilitates continuity of care following the genetic consultation. However, self-referral may be acceptable to some units. All units welcome phone contact from individuals who have concerns about their genetic history or who have a genetic concern about their current pregnancy. A brief discussion with the duty genetic counsellor will clarify the appropriate approach.

HOW CAN I GIVE FEEDBACK TO THE AUSTRALASIAN SOCIETY OF GENETIC COUNSELLORS ABOUT MY PERSONAL EXPERIENCE OF GENETIC COUNSELLING?
As members of a relatively new, developing profession, it is very important that we understand the way in which our services are received and / or experienced by members of the public. Please provide this feedback via our email contact link: secretariat@hgsa.org.au

HOW CAN I PREPARE FOR MY APPOINTMENT TO THE GENETIC COUNSELLING SERVICE?
Before attending a genetic counselling session, it may be helpful to find out as much information as you can about the medical history of both sides of your family as this is the type of information discussed at your appointment. This might include:

  • How you are related to each family member, including whether family members are adopted or half relatives 
  • any major health conditions that affect family members
  • the age of onset of each condition
  • information on miscarriages
  • the cause and age of death of family members (if relevant)

We appreciate this is sometimes not always possible as some people do not have contact with some branches of their family or may be adopted and know very little family history information. If you were concerned about the level of information you will be able to gather, it would be helpful to discuss this with the genetics service before the appointment. You may also sometimes be asked to bring photographs of family members to an appointment.
It’s a good idea to write down any questions you think of before going to a session to make sure they are answered.

HOW DO I FIND A GENETIC COUNSELLING SERVICE NEAR ME?
A list of the genetic counselling services within Australia and New Zealand can be found by following our link to find a genetic counsellor.

IT SOUNDS COMPLICATED. HOW CAN I REMEMBER ALL THE INFORMATION DISCUSSED AT MY APPOINTMENT?
Most genetic counselling services will provide you and your referring doctor with a summary letter of your appointment. The genetic counselling service will also have access to fact sheets, brochures, booklists and recommended internet resources about the genetic condition and support services. If you would like a recording of your consultation, you may like to check whether you can bring a blank audio tape with you to your appointment for this purpose.
You can always call or ask to be seen again if you have further questions or concerns

THERE IS SO MUCH DISCUSSION OF POSSIBILITIES. WILL THE GENETIC COUNSELLOR TELL ME WHAT TO DO?
Genetic counsellors do not make decisions for you – their role is helping you reach decisions which are appropriate for you and your family. After genetic counselling, you may have to make decisions about:

  • whether or not to have genetic testing done
  • who to tell about the results of the test
  • whether you want medical treatment, if it is available
  • how you are going to live your life in response to the results of the testing
  • how much support you are going to need

Genetic counsellors are skilled with helping people reach a decision which feels right for that person. For some people, all they need is a lot of information. Once they have this information, they feel that they have everything they need to make their own decision. For others, it is easier to go through a series of scenarios (“Imagine if”) where they try to think about how it would feel if they opted for testing, how they might cope if the result was good news or bad news, who they would talk to about it, how it might affect their financial and personal lives and how it might affect the people around them.

THIS IS MY FIRST APPOINTMENT WITH A GENETIC COUNSELLING SERVICE. WHAT CAN I EXPECT FROM THIS APPOINTMENT?
This appointment will usually take between 1-2 hours. It may involve a number of different members of the genetic counselling service depending on the types of genetic condition to be discussed. Your genetic counsellor will

  • ask you what specific questions or concerns you have and he/she will aim to answer these during the session. You may also like to bring a family member or friend for additional support.
  • take a record of your family and personal medical history. They will ask questions about your relatives such as names, dates of birth and death, causes of death and general health. If English is not your first language an interpreter can be arranged. Once they have all the needed information they will be in a better position to explain
  • Provide information on what they know about the condition, how it may affect family members and how/if it is inherited in your family, how to manage the condition and any relevant support resources and research.
  • may ask you to have a blood test, usually within the same building. You can find out what is involved and how long results take before taking any tests. Although genetic diagnosis is available for an increasing number of conditions, technology is not at a point yet where every condition can be identified, so it is important to be aware that you - may not get a diagnosis or there may not be a genetic test available at that point in time. If a diagnosis is not made or a genetic test is not available, it may be appropriate to be reviewed in the clinic at a later point in time.
  • Provide support and counselling to promote informed choices and the best possible adjustment in view of risk assessment, family goals, ethical and religious values

A medical specialist may sometimes need to do a physical examination. Draw their attention to any feature of concern to you. They may also wish to examine family members who are present. You can request a doctor of the same sex if preferred. In some cases, photos can assist with diagnosis. Written permission is required and you can refuse the request for photos.

After the initial consultation an opportunity may be provided to go over the information and offer on-going support as families and individuals learn about the condition. It is very common for people to think of many questions after the genetic counselling session, and new questions also arise as a condition develops. Follow-up is provided in further consultations, if geographically possible, or by telephone. A letter summarising the consultation(s) is also provided.

The Human Genetics Society of Australasia has documented guidelines for the Process of Genetic Counselling.

WHAT IS GENETIC COUNSELLING?
Genetic counselling is a communication process, which aims to help individuals, couples and families understand and adapt to the medical, psychological, familial and reproductive implications of the genetic contribution to specific health conditions.

WHAT IS GENETIC DISCRIMINATION?
Some genetic information may have implications for your options for insurance cover such as life, income protection, disability, trauma, business and insurance relating to bank loans.

The HGSA position statement provides information for individuals and professionals about the implications personal genetic information may have on Australian insurance products.:

What is the difference between a genetic counsellor and other health professionals who provide genetic counselling?
In Australasia, genetic counsellors, must have completed an approved postgraduate program in genetic counselling which involves specialist training in genetics and counselling.



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To facilitate support for those affected directly or indirectly by genetic conditions throughout Australasia.

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