Questions You May Have For Your Genetic Specialist

The questions in this brochure will assist you in getting as much information as possible from your visit with a genetic specialist.

What is the diagnosis and what does it mean?

Is there a cure for this condition?

How does an individual get this condition?

What tests are available to see if a person has or carries this condition?

Is there a prenatal test and are there any special pregnancy precautions?

What diagnostic procedures are recommended and what are their risks?

How accurate is the diagnosis?

Where can I obtain a second opinion?

What are the characteristics of this condition?

What is the treatment for this condition?

What other specialists will I need to see?

How do you care for a person with this condition?

What are the medical costs likely to be?

How is this condition passed from one generation to the next?

Can a person not have this condition and still pass it on to his/her children?

Will my other children or siblings be affected?

How will this diagnosis affect my health insurance?

When would it be appropriate to see you again?

Are there services, programs or financial assistance for those who have this condition?

Where can I get additional information about this condition?

How can I contact other people or families in a similar situation?

What research is being done on this condition? Where?

            Your other questions

Genetic specialists can often provide answers to the questions above. However, limitations do exist and finding answers is not always possible.

You will probably be asked questions about medical history and family health history. These questions may seem personal, but they are important to help the genetic specialist search for answers.

This list of questions will help you be prepared when you arrive at the genetics appointment. Consider taking notes or using a tape recorder. Ask about follow-up appointments or telephone calls, if needed, and allow yourself plenty of time to take in all the information.

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