Deciding To Be Tested 

Personal Issues

If you are considering predictive testing, it is important to think carefully about what that information might mean for you and your family. You will be learning something about your future - Are you going to develop HD or not? The answer to that question should never be forced on you. This is a deeply personal decision that should be made only after you have had an opportunity to understand the technical and emotional aspects of predictive testing, and to balance the advantages and disadvantages of knowing whether you are likely to develop this disease. Due to the complexity of this decision and the potential emotional impact of the results, testing is usually offered only to individuals 18 years or over.

Counseling is an important part of this process, both before and after you receive results of predictive testing. Before testing, counseling will focus on exploring reasons for taking the test and preparation for receiving results. After testing, counseling is geared to offering support and assistance in understanding the impact of the test results on your life and the lives of your family members.

The technological issues related to predictive testing have been introduced above. Your genetic counselor can review these and explain them more fully. He or she can also tell you what blood samples will be needed in your particular family, and whether testing will be possible for you should you decide to request it. The emotional issues may be more difficult to address. The decision to have predictive testing is a big decision. Counseling can provide an opportunity to explore the reasons for having the test and the possible effects this testing will have on your life.

Here are some possible questions to ask yourself and to discuss with those close to you:

  • What does it mean for you to be at risk for HD?
  • How has it affected your life and your plans for the future?
  • Would this be different if you knew whether you are going to develop HD?
  • How will it make you feel if you are told you have inherited the gene for HD?
  • What will it mean for you if you have not inherited the gene for HD?
  • How will the results of the test affect other members of your family?
  • How have you coped with difficult times in the past?
  • Have there been stressful or difficult times in your life?
  • Are there people in your life who will help you cope?
  • Who will you tell about your decision to have predictive testing?
  • Who will accompany you when you receive the results of the test?
  • Would you want some time off from work after you receive the results?
  • Are you thinking about having children?
  • Would you like more information about the options available for testing a pregnancy for HD?