Some frequently asked questions by alendar


Some frequently asked questions

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									What will happen in the appointment?                                                                                             How long will it take?
Family history                             Draw their attention to any feature        taken to help diagnosis, or for research   Clinic waiting time
The clinical geneticist or the genetic     you may think is relevant. They may        purposes. The doctor must ask you to       Sometimes appointments can take
counsellor will ask you about your         also wish to examine the parents           sign a permission form to have photos      longer than expected. You may have
family’s health history and record it in   or other family members present to         taken, and it is OK to ask what these      to wait up to an hour.
a genetics file. They may ask about        compare family features. If your           will be used for, or to say NO.
                                           examination requires undressing and                                                   The appointment
your relatives, including their names,                                                Blood
dates of birth and death, causes of        you would prefer a doctor of the same                                                 Each appointment usually takes
                                           sex as you, do ask.                        You may be asked to have a blood           approximately 1 hour. You may be
death and general health.                                                             test following your appointment. This
                                           Photos                                                                                asked to have a blood sample, x-rays,
Examination                                                                           can usually happen within the same         photos taken following your appoint-
The clinical geneticist may wish to        Sometimes, with your permission,           building.                                  ment, so it is best to allow a total of
physically examine you or your child.      photos of you or your child will be                                                   two hours.

What are my rights?
Respect and Autonomy                       Protection of information                  Informed choice                             purpose, if you need translation.
You have a right to expect that you        Genetic Health is committed to pro-        Genetic Health is committed to facili-     If you are unclear why you are
and your family members will be            tecting client privacy and confidential-   tating informed choice. Therefore           being asked for specific informa-
                                                                                                                                  tion, ask for clarification.
treated with respect. Genetic Health       ity. We have developed policies for        Ask for clarification if you are not
is committed to providing you with         the protection of client privacy in         sure of the meaning or implications       Taking tests
accurate information and support to        compliance with privacy legislation.        of what was said                          Clarify what is involved and how
enable you to make the best decisions      To obtain a copy of the client pri-        If you are still not sure, ask them to       long test results take
for yourself at the time.                  vacy policy pamphlet contact Genetic        say it another way.                       Ask how your results will be
                                           Health Services Victoria, on (03)          Ask for information in writing which         returned to you and do state your
                                           8341 6201 or visit our website,             you can read afterwards. Hospitals           preference
                                                  have medical translators for this

What will happen afterwards?                                                          What if I am not satisfied?
Waiting for results                        a life-altering experience. Support is     of Victoria facilitates an informa-        Opportunities for Improvement
You can ask when you can expect            available if you need.                     tion, support and advocacy network,        If you are concerned or not satisfied
to receive the results, and how you        Living without a diagnosis                 which empowers people to overcome          with the consultation feel free to con-
will get them (e.g. by phone or in                                                    genetic challenges. You can contact        tact Genetic Health Services Victoria
                                           This can be frustrating for some peo-
person).                                                                              the GSNV on (03) 8341 6315                 on 8341 6201. Your written com-
                                           ple not having a diagnosis may lead
                                                                                      Voice/TTY or              plaint can be addressed to Professor
Written information                        them to other services or more ques-
                                           tions about their health.                  You have a choice                          Agnes Bankier, Director.
A letter will be written summarising
your appointment and sent to you and       Support groups                             If you see a doctor at clinic and do
your referring doctor.                                                                not feel comfortable seeing that partic-
                                           The Genetic Support Network of
                                                                                      ular doctor again, you can request to
Living with a diagnosis                    Victoria can put you in touch with the
                                                                                      see someone else at that clinic, or at
To be given a diagnosis that you have      most relevant group for you and your
                                                                                      another clinic at a different hospital.
a particular genetic condition can be      family. The Genetic Support Network


          Some frequently
          asked questions

                                                                                                            Genetic Health is committed to
                                                                                                             providing quality health care.
                                                                                                          This booklet aims to give you an
                                                                                                           overview of the types of services
                                                                                                          Genetic Health provide and what
                                                                                                           you and your family can expect
Why do people come to genetics?
Some examples of reasons for referral            For screening and/or diagnostic tests         The genetic health team may use a             Not all of this information will lead to
include:                                          before or during pregnancy.                   combination of information about:             a diagnosis, and sometimes there is no
For information on a particular                 To try to find out the underlying             Your family’s history                        blood test that can be done, or the
                                                  cause of a collection of signs and                                                          results of a blood test are not useful in
 genetic condition and the likeli-                symptoms in a person.                         Your own health history
 hood of other members of a family                                                                                                            getting to the cause of the problem.
                                                 Although genetic diagnosis is available        A physical examination of the per-
 being affected.                                                                                 son that is affected, and perhaps            In some instances, even after a thor-
                                                 for an increasing number of conditions,         their family members                         ough investigation, there may not be
For information on testing for adult
 onset conditions such as Huntington             technology is not at a point yet where                                                       an answer to what the underlying
                                                 every condition can be identified, so it       Results of x-rays, or blood tests
 Disease before symptoms appear.                                                                                                              cause of a condition is. This may be
                                                 is important to be aware that you may           that show a person’s genes or
To find out if a person is a carrier                                                            chromosomes and chemicals in the             frustrating for the person or family
 of a gene that could cause a genetic            not get a diagnosis.                                                                         involved.
 condition in future generations.                                                                blood.

How should I prepare for my appointment?                                                        What should I bring?
Ask questions about family health                Make a note of things you want                 Information about family history              Friend for support
history                                          to ask                                         Your (or your child’s) medical his-           A friend could be your preferred sup-
Ask both sides of your family about              Leading up to your appointment,                tory                                          port person and can help you to recall
your relatives’ health; death, miscar-           write down questions as they occur to          It can help to keep the whole medi-           information that was discussed in the
riages, ages, and even photographs if            you, and bring these along. A written          cal history together in one folder and        appointment, or you may choose to
possible, as these can often provide             list will help to make sure your ques-         bring it to every appointment.                bring a tape recorder.
clues.                                           tions are covered.                                                                           Interpreters
                                                                                                Family member
Do I have to pay                                 Bring your child's Health Centre book                                                        If English is not your first language,
                                                                                                A family member can provide moral
Your consultation is free of charge. You         and available records as appropriate.          support, and help with information            the hospital you are visiting is able to
may need a test which is not currently                                                          about family health history.                  arrange an interpreter.
available in Victoria, in which case you
may be asked to contribute or pay for
the test.

Where are genetic clinics held?
Clinic Location                      Clinic Specialty                  Contact details           Clinic Location                    Clinic Specialty                Contact details
Albury/Wodonga                       General genetics                  Albury/Wodonga            The Royal Melbourne Hospital       General genetics
Genetics Clinic                                                        Genetic Counsellor                                           Cancer genetics
                                                                       (02) 6056 0451                                               Neuro-genetics                  (03) 8341 6201
Alfred Hospital                      Adult neuro-genetics                                        Royal Children’s Hospital          General genetics
                                     Cystic Fibrosis, Haemophilia      (03) 8341 6201                                               Metabolic, Neuro-genetics
Austin & Repatriation Hospital       Cancer genetics                   (03) 8341 6201                                               Skeletal dysplasia
                                                                                                                                    Cystic Fibrosis
Ballarat Genetics Clinic             General genetics                  (03) 8341 6224                                               Huntington Disease              (03) 8341 6201
Bendigo Genetics Clinic              General genetics                  (03) 8341 6224            The Royal Woman’s Hospital         Perinatal genetics
Frankston Genetics Clinic            General genetics                  (03) 8341 6201                                               General genetics                (03) 9344 2121
Geelong Genetics Clinic              General genetics                  (03) 8341 6224            Sale Genetics Clinic               General genetics                (03) 8341 6224
Mercy Hospital for Women             Perinatal clinic                  Genetic Counsellor        Shepparton Genetics Clinic         General genetics                (03) 8341 6224
                                                                       (03) 9270 2394            St. Vincent’s Public Hospital      Neuro-genetics                  (03) 8341 6201
Monash Medical Centre                General genetics                                            Traralgon Genetics Clinic          General genetics                (03) 8341 6224
                                     Cancer genetics
                                     Neuro-genetics                    (03) 9594 2026            Warragul Genetics Clinic           General genetics                (03) 8341 6201

Peter McCallum                       Cancer genetics                                             Warrnambool Genetics               General genetics                (03) 8341 6224
Cancer Institute                     Familial Cancer                   (03) 9656 1064

Who might I meet at the clinic?
Clinic Co-ordinator                              who is training to be a clinical geneticist.   to understand the medical information you     (heart), orthopaedic surgeon (bones) or
                                                                                                have been given and its effects on you and    a dietician.
The clinic co-ordinator’s role is to arrange     Certified Genetic Counsellor
your appointments and make sure things                                                          your family.
                                                 A Genetic Counsellor is a fully qualified                                                    Students
run smoothly while you are at the clinic.        health professional who has specialist         Social Worker                                 Medical students, genetic counselling
Clinical Geneticist                              training in genetics and counsellling and      A social worker can provide emotional         students or social work students may
                                                 will help you to understand the medical        support for you in your situation, as well    occasionally ask to sit in on appointments.
A Clinical Geneticist is a specialist doctor
                                                 information you have been given and its        as practical help in finding community        If you are not comfortable with having
(or consultant) who has spent many years
                                                 effects on you and your family.                resources to assist you.                      another person in the room, it is OK to
studying genetics after training in another
                                                                                                                                              say no.
speciality, such as paediatrics.                 Associate Genetic Counsellor                   Other specialists
Fellow                                           An Associate Genetic Counsellor is a           Depending on the specific condition, the      Ask to be introduced to all of the health
                                                 professional who is in the process of          genetics specialists may require the help     professionals who see you, and make sure
A genetics fellow is a fully qualified doctor    completing their training and will help you    of other specialists, such as cardiologist    you know their names and their roles.

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