Question

For this case study we will take up the matter of genetic testing for untreatable genetic diseases. 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.

Should prospective adoptive parents be able to request and receive genetic information regarding the infant they are considering prior to adoption?

Should infants being offered for adoption be tested for Huntington’s disease and other genetic disorders as part of standard procedures?

Should adoption agencies be pro-active in providing the results of these tests for prospective parents?

Should states be allowed to pass laws requiring such testing?

Answer 1

1). Should prospective adoptive parents be able to request and receive genetic information regarding the infant they are considering prior to adoption?

According to the recommendation of The American Society of Human Genetics (ASHG) and ACMG,

• The genetic testing of all new-born must be consistent for all that belongs to a similar age
• During the adoption process, the genetic testing must be limited to the conditions that manifest symptoms during the childhood or those that can be treated or prevented with medical technology if diagnosed
• The prospective adoptive parents must not test the child for having the genetic variations that manifest during the adulthood or late adulthood or those that do not have medical treatment.

2). Should infants being offered for adoption be tested for Huntington’s disease and other genetic disorders as part of standard procedures? Should adoption agencies be pro-active in providing the results of these tests for prospective parents? Should states be allowed to pass laws requiring such testing?

No, because the symptoms of Huntington’s disease (HD) typically onset during the late adulthood and there is no medical treatment available to treat HD. Such type of genetic testing is unnecessary from the medical point of view.