Question

Huntington’s disease is a devastating genetic disorder with no known effective treatment. However a test for detecting the HD gene is available and relatively inexpensive to administer. Carriers of the HD gene typically develop symptoms in the prime of their life that range across a variety of physical and emotional disorders. In advanced stages they are rendered helpless against involuntary muscle spasms throughout the body and suffer irrational emotional outbursts. Death inevitably occurs usually 15-20 years after the onset of symptoms.

1. Should infants being offered for adoption be tested for Huntington’s disease and other genetic disorders as part of standard procedures?
2. Should adoption agencies be pro-active in providing the results of these tests for prospective parents?

Answer 1

Huntington's disease

It is a hereditary disorder of basal ganglia that leads to progressive loss of muscle coordination. Huntington's disease symptoms usually may develop by 45-50 years of age, but in some cases early 20s it may appear. It affects mainly the emotional and motor abilities. Treatment to reduce symptoms are available but there is no cure.

Adoption is the act of adopting. It is the process of acceptance of a child of other parents as if she or he were one's own child.

When comparing with the past decades, the trends and methods of adoption process is largely changed. Increased availability of medical facilities to Identify he risk of developing a genetic disorder give rise to trend of increased rate of genetic testing before the adoption.  

According to American Society of Human Genetics ( ASHG), the infants for adoption should undergone all genetic testing as other babies to Identify the possible risk for the metabolic and genetic disorders of childhood to prevent the complications. But the genetic testing before the adoption is based on the history of the child's biological family and also the tests should be limited to any medical condition that the child have early symptoms of the particular disease. ASHG and the Government doesn't encourage any genetic testing for the disease that may develop in the future such as Huntington's disease or Alzheimer's disease etc. If the biological parents or the blood relatives of the child is having any symptoms of Huntington's disease, then the genetic testing for Huntington's disease can be performed before adoption , on the basis of interest of prospective parents' or biological parents or the child's( if he is in the age of understanding).

Adoption Agencies should be proactive in providing the all details of the infants for prospective parents as the disclosure of necessary details regarding child's health status is a must step before adoption. The adoption agencies are required to give the details from their enquiry regarding child's medical history and family health history but no compulsion on adoption agencies in conducting the genetic testing. But if they are aware about any results of genetic testing of the infant, they are not allow to conceal it. They have to reveal it to prospective parents as it may help them to Identify the early signs and interventions there by to prevent complications.