Questions to ask a doctor about gene therapy
Healthdirect suggests writing down or printing your questions and taking them to the appointment, and its Question Builder gives general tips on what to ask a GP or specialist. The cards below follow the topics healthdirect covers, the condition, the treatment, its cost, any tests and consent, worded with a genetic condition and gene therapy in mind.
General information, not medical advice: these are questions, and only your own doctor can answer them for you. Healthdirect’s Question Builder lets you build and print your own list.
- Written from
- Healthdirect Australia
- Bring
- Your questions and a list of all your medicines
- Consent
- In most cases you can change your mind
- This page prints without the site’s menus
Before the appointment
Healthdirect’s suggestions for getting the most from an appointment:
- Take a written list of every medicine you use, including those bought without a prescription and supplements such as vitamins, and show it to each new health professional.
- Ask a friend or relative to come along to help you remember, and bring a notebook, or make notes on your phone.
- If something is not clear, ask the doctor to repeat it, to explain it another way, or to write it down so you can read it again later.
Healthdirect’s guide to genetic disorders says gene therapy is mostly still in research and clinical trials, and is not generally available in Australia. That is worth knowing before the conversation starts.
Five question cards
Tick the ones that matter to you, and add your own. Each card follows a topic on healthdirect’s page of questions to ask your doctor.
About the condition
- What is this condition called, and could you write the name down for me?
- Does it have any other names I might see?
- How serious is it, and is it likely to get better or worse?
- Can it be passed on?
- Are there support groups for people with it, and where can I read more?
About gene therapy as an option
- Is gene therapy used for this condition, or is it still being studied?
- What is the evidence for it, and how likely is it to work for someone like me?
- What are the risks and side effects, and could any of them be permanent?
- How long would the treatment take?
- What are the other ways of treating this?
- Is there a clinical trial I could join?
- How soon do I need to decide, and is it all right to take time to think it over?
About cost
- What will it cost, and can I have the estimate in writing?
- Will I have out-of-pocket costs, and how much?
- Does Medicare, a concession or Veterans’ card, or private health insurance cover any of it?
- Over what period would I need to pay?
About tests, including genetic tests
- What is the test for, and what happens if I decide not to have it?
- How is it done, and are there any risks?
- How accurate is it, and what would an unusual result mean?
- When, and how, will I get the results?
- Would it help to see a genetic counsellor first?
Before I agree
- Have all my choices been explained to me?
- What are the risks, and how likely is each one?
- What are the benefits, and what is the purpose of this?
- Can I have an interpreter or a support person with me?
- If I change my mind later, what should I do?
Questions written for this guide from the topics on healthdirect’s questions to ask your doctor and informed consent pages.
About genetic tests and counselling
Healthdirect says a genetic test is only the first part: what matters is understanding what the result means, and for that it suggests talking to a doctor or a genetic counsellor. A positive result for a genetic change does not always mean a person will develop the disease linked to it, and a test may not always give a clear answer.
Results can affect how people feel about themselves and their future, and can bear on work conditions and on the chances of getting insurance, which is why healthdirect suggests starting the process with a family doctor or a genetic counsellor. Genetic counselling can be given by a doctor or an allied health professional with specialised training in genetics and counselling.
Informed consent to treatment
Healthdirect explains that to give informed consent in Australia, a person must have the legal capacity to consent, give consent voluntarily, be given information about their condition and options, including the benefits and risks that apply to them, and have the chance to ask questions. Consent can be given verbally or in writing, and for complex treatments a health professional may ask for it in writing.
In most cases a person can change their mind even after giving consent, and should tell the doctor clearly if they do. Where someone does not have legal capacity, a substitute decision-maker may consent for them and must act in their best interests; the rules can differ between states and territories. Consent to take part in research has its own rules, covered on rung 04, and trials are on rung 03.
A nurse to talk to, any time
The healthdirect helpline is 1800 022 222, known as NURSE-ON-CALL in Victoria, and it is answered by a registered nurse at any hour, every day of the week. Healthdirect’s Service Finder can help find doctors, pharmacies, hospitals and other health services.