Knowledge is power, but that power might not always be good. Before predictive genetic testing is done for Huntington’s disease (HD), a host of ethical and social questions should be considered.

Ethics are incredibly important when it comes to predictive genetic testing for a terminal genetic disorder. When there’s no cure for a devastating disease such as HD, the test result can lead to significant psychological distress (e.g. depression, guilt and fear) and social harm (e.g. discrimination and stigmatisation in the workplace).

On the other hand, finding out whether you’ll get HD or not, might give you a greater sense of clarity about your life and how to plan for the years ahead.

Important questions

Do you have HD in your family? Before you opt for predictive testing, ask yourself the following questions with the help of a trained genetic counsellor and/or a psychologist:

– How will a positive test result affect my current job and the rest of my career?

– Should I disclose a positive test result to my current and future employer(s) and what could the impact be? (Bear in mind that employers may fear that you’ll be frequently absent, or that you won’t be able to do the job properly if you become ill. For these reasons, they may discriminate against you.)

– How will a positive test result influence my current and/or future intimate relationship(s)? At which point will I tell my partner that I’m going to get HD at some point in my life?

– Will I disclose a positive test result to my family members? And what about those family members who don’t want to know their risk? (Remember: if you test positive, each of your children has a 50% chance of testing positive, too. On the other hand, protecting this information might mean that other family members will not be aware of their HD risk.)

– How will a positive test result influence family planning? Will I risk passing the HD gene on to my offspring? And will I consider assisted reproductive technology such as pre-implantation genetic diagnosis?

– Will I disclose my HD risk before or after doing predictive genetic testing? (Weigh the pros and cons, keeping in mind that insurance companies often restrict at-risk persons through rate hikes, exclusive clauses and even denials.)

– How will a positive test result affect where I live? Should I perhaps move closer to a hospital or care facility? Should I perhaps go for a single-storey home instead of a double-storey one?

It’s really important to think about all the implications for your family members.

For instance, you know your grandfather had HD and you want to get tested too, but your healthy father doesn’t want to know if he is at risk. If you test positive, it will mean that your dad has the gene as well. If you disclose your status to the family, he will know that he’s going to get ill as well.

Another possible scenario: you’re one of a pair of identical twins. You want to get tested, but your sibling doesn’t. However, if you test positive for HD, it means that you both have the gene. Who gets to decide?

REMEMBER: Getting tested for HD is a major life decision that should be made with the assistance of a skilled genetic counselling team. Get in touch with a testing clinic in your area and carefully think things through.

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