Scott, a 30 year-old male, has a family history of Huntington’s disease. Huntington’s disease causes neural degeneration, and eventually death. Affected individuals may experience mental and behavioral changes including paranoia, hallucinations and dementia, as well as physical symptoms such as difficulty walking and jerky movements. The disease has a late onset, which means symptoms don’t show up until about 35-40 years of age. Most people live about 20 years after symptoms become apparent.  Scott decides to be tested for the genetic mutation that causes Huntington’s disease and finds out that he has it and will eventually get the disease.

Meanwhile, Scott’s wife, Catherine, discovers she is pregnant. Together they decide that they should get genetic testing done to determine if their unborn child inherited the mutation and will also get Huntington’s disease in adulthood. They will continue with the pregnancy regardless of the results. Although there is no medical intervention possible to stop the disease, they feel strongly that they want to know about their child’s future. At their next obstetric appointment, they inform their doctor of their wishes. The doctor hesitates because the parents are requesting information about a disease that will not affect their child until adulthood. At stake is the unborn child’s autonomy. Perhaps the child will NOT want to know if Huntington’s will strike in the future. But, by requesting the information during pregnancy, the parents are precluding their child’s free will. The parents counter that they will be better able to prepare their child for the future and will know how to offer appropriate emotional and psychological support.

If you were the doctor, what would you decide?

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