FAQs – Preparing for your Genetic Test

This information has been developed through collaboration with ophthalmologists, geneticists, research clinicians and patient representatives to help you find the answers that you need.

Although the questions are quite general, it is important to remember that every situation is unique, and not all the questions may be relevant to your particular situation. Bring any questions or concerns with you to your appointment – we suggest you write them down. You might also want to bring your partner, relative, or friend with you. If you require an interpreter, let the department know ahead of time.

After the appointment, it is likely that you will be sent written information that covers the topics that were discussed. This will help you to remember everything. You might also want to show the written information to other members of your family. Ask the specialist whether written information will be given to you and how soon you can expect it to arrive.

Information provided by you will be treated confidentially and will only be shared with other relatives or health professionals involved in your care with your permission. Relatives will never be contacted without your permission.

Remember, you do not have to take a genetic test, it is your choice. You should only go ahead with genetic testing when you feel sure that it is the right decision for you and your family.

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