When it comes to medical care, my husband and I generally call the shots in our family.
Most people would agree that this is an appropriate role for us to play, but certain medical decisions aren't normally the purview of parents. Nor should they be. Foremost among them is the decision to screen children for some genetic diseases.
During the last 25 years, the number of genetic tests has increased rapidly. It's now possible to identify alterations, or mutations, that increase the risk of a variety of diseases -- sickle cell anemia, cystic fibrosis, heart disease, diabetes and cancer to name a few.
Sometimes identifying a mutation early in life is beneficial. Newborn screenings for hypothyroidism and the metabolic disorder phenylketonuria, for example, can prevent potentially irreversible consequences that may develop if the conditions are left undiagnosed and untreated.
When genetic testing offers such obvious benefits to a child, the medical community generally agrees that parents should consent to it -- even seek it out. However, more often than not, the advantages of testing are not so clear-cut.
The ability to detect a genetic abnormality often precedes the development of the disease by many years. And, for many conditions, knowing that a child is genetically predisposed offers only anguish, not solutions -- no treatments can prevent the diseases or delay their onset.
Perhaps the most notable example of this is Huntington's disease, an untreatable and debilitating neurological condition that causes uncontrollable body movements and damages intellectual functioning. Fifty percent of children with an affected parent will inherit the Huntington's gene and go on to develop the disease. Although the gene is present from conception, symptoms of Huntington's typically don't occur until middle age.
With diseases that don't manifest until later in life, most medical ethicists agree, parents should not make decisions about testing their child unless the results offer potential medical benefits. Instead, children should make these choices when they are mature enough to carefully weigh their options and understand the implications.
"Allowing parents to make the decision about testing for their children robs them of their ability to decide for themselves whether or not they want to know their genetic status," says Dr. Mark Levine, chairman of the American Medical Assn.'s Council on Ethical and Judicial Affairs. In fact, studies have found that adults at risk for genetic diseases often decline testing.
