When Parent and Child Disagree on Genetic Testing for Huntington’s Disease
Getting the Huntington’s disease genetic test is a major life decision that weighs heavily on a person socially, emotionally, psychologically, and physically. I’ve written about the genetic testing process and its ramifications in many of my previous columns.
But what if a genetic test didn’t only tell you your genetic status for HD — what if it also revealed the genetic status of your parent? Whoa!
The first I heard about this dilemma was in 2007, from a New York Times story about a young woman whose parent knew they were at risk for HD. The parent didn’t want to know their HD genetic status, but the daughter, who was old enough to get tested, did.
This situation can result in two outcomes: 1) The child tests negative, but the parent is still at risk for HD, so it doesn’t change anything for the parent; 2) The child tests positive, confirming that the parent also is positive for HD.
In the Times story, the daughter unfortunately tested positive, revealing the parent’s positive HD status, too, which led to a lot of family struggles.
As an HD community advocate and former chairman of the Huntington’s Disease Youth Organization (HDYO), I am starting to hear more and more about these types of situations involving young people ages 17 to 35. This generation has grown up with internet knowledge at their fingertips, and the pipeline for clinical trials has never been stronger than it is now. Hope for better treatments on the horizon is strong.
Why not learn about your HD status if you feel you can truly plan to do something about a possible positive result? The parents of these younger adults likely didn’t grow up learning about HD on the internet, and they may not feel the same hope, having gone their entire lives without much progress in bringing new HD medicines to market.
Put yourself in the shoes of a young person. The parent is still at risk and doesn’t want to know their status. Do you talk to them and try to convince them to get tested? Do you go behind their back and get tested yourself? If you do, do you share the results with them or just keep it a secret?
How can a young person get the information they need to plan for their future without upsetting the parent? Is it selfish of the parent to refuse to get tested, or is it selfish of the young person to want testing if a parent doesn’t?
If HD genetic testing weren’t already hard enough on an individual, this situation just isn’t fair for anyone trying to work through it. It’s a subject that’s debatable both at the dinner table and at the grand rounds. I don’t think there is a right or wrong answer.
As we move into a hopeful future for preventive treatments for HD, I pray these family genetic dilemmas will disappear, with everyone wanting to get tested. But until then, I envision more of these situations occurring.
For anyone finding themselves in this situation, I recommend speaking with others who are familiar with genetic testing, such as a genetic counselor or a professional from one of the many HD patient advocacy organizations. A list of things to think about before testing can be found at HDYO’s genetic testing checklist.
If you were a young person in this situation, what would you do? Please share your thoughts in the comments below.
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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.36th Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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brigitte
It's actually very simple. A young adult has the right to their information re their status of being positive or negative. If knowing of their fear re testing, respect it like an autonomous adult. So just get tested without disclosing your intent or later on your results. In this context maintaining you privacy is ethically responsible to spare them of too much info. Let's say hypothetically the result was positive, so then it impacted on your career choices. Like from being an airforce pilot and doing a phd, but instead becoming banking clerk with a short diploma, so parents question why? It's enough to say -as if you actually didn't know your HD status - "my being at risk is making me take choices that include a chance of my having HD, as your not ruled out as a carrier." Then say no more! Lets be honest, were you to have got very intoxicated and had a rare one night stand, then suspected an STD and checked that at a clinic It's very likely you'd keep the need for such a test and results private. It's not something your parents would want shared. Your HD testing with a scared parent re status is exactly the same. Regardless of your negative or positive HD result. Remember you are an independent adult, you don't share private medical info aside from covid test results if you've exposed them to it.
Anne Onymous
Got a positive test result late 2019. I think my affected parent wants to know. But it isn't something they can unknow so I haven't told them. Everyone says I should tell my parent that I have the gene and, therefore, they do too. Everyone, except my genetics counselor and neurologist--my parent should have the right to test or not test and make that choice themselves, they say. I will be making a visit home soon--the first since my testing.
B.J. Viau
Thanks for sharing your experience! I think you have the right approach!