Personal Genetics Education Project

Current Genetics Update – CGU looks at Huntington’s Disease

High School teachers often examine the biology of Huntington’s Disease in their classes.  A rare, devasting neurological disorder, it is an outlier compared to many other conditions because it is inherited in a dominant pattern and it is 100% penetrant.

For a teacher looking to include the human side of Huntington’s Disease into a classroom discussion, we still feel that Amy Harmon’s article, Facing Life with a Lethal Gene, in the New York Times is standing the test of time.   Harmon’s piece follows a young woman getting testing for the Huntington’s variant, and examines what it means for her, her friends, and her mother who will in effect be made aware of her status if her daughter finds out she is positive for the variant.  The videos can be used to great effect in classrooms, as homework, or for a teacher looking for a way to frame some of the issues for students.

Two new things about Huntington’s Disease that have caught pgEd’s eye. First, at the GET Conference, we learned of HD Buzz, a website featuring Huntington’s Disease news written by scientists for the general public. If a student wanted to learn more about HD, this is a great starting point as all their writing is based on peer reviewed work, and their stated aim is to be impartial and fair when discussing the research.

We know from experience that students and teachers often find legal cases around genetics to be compelling; a case in the UK has been in the news this week.  Two young children, in the foster care system and likely candidates for adoption, may come from a family with a history of Huntington’s Disease. The court was asked to decide if the children should be genetically tested for the HD variant, with the question being – do potential adoptive parents have the right to know the children may be at risk?  Or do the rights of the children preclude such testing?

The Judge decided that the children should not be tested. His thinking is summed up at the end of a rather lengthy (but interesting) summary of the case: ” Balancing all these factors together, I have reached the clear conclusion, on the facts of this case, that it is not in the welfare interests of Y or Z  for the court to order testing to establish whether they are carrying the gene for HD. The risk, identified in the consensus of opinion amongst professionals working in this field including Professor Patton, of emotional and psychological harm to the boys if one or both of them has the gene, including the risk of separation of the siblings and the damage to their personal autonomy by being deprived of the right, available to all other children, to decide for themselves when they reach adulthood whether or not to undergo the test, outweighs the risk of harm arising from the likelihood that it will be harder (though not, in my judgment, impossible) to find an adoptive placement if genetic testing is not carried out.”

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