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Pre-Adoptive Genetic Testing Policy

written by: Vasanth•edited by: lrohner•updated: 1/15/2011

A pre-adoptive genetic testing policy establishes recommendations for the screening of genetic diseases in the adoption process. The interest of the child should be the primary motivation for genetic testing. Diagnosing diseases that can be treated early in life should be the goal.

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    What is Genetic Testing?

    Genetic testing reveals information about a person's genes. It can be used to screen for genetic diseases or offer insight into future medical conditions. Genetic testing also reveals information about normal traits that are desirable.

    There are several types of genetic tests. Prenatal screening tests a fetus for genetic abnormalities before birth, while newborn screening checks for genetic diseases that can be treated during the early stages of life. Diagnostic testing can be used to confirm a genetic disorder, when symptoms of the disorder are present. Predictive and presymptomatic testing checks the DNA for mutations that are associated with diseases that develop later in life, such as cancer. It provides a risk assessment or the likelihood of developing a specific disease.

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    How is Genetic Testing Used in the Adoption Process?

    During the adoption process, it is the adoptive parents that usually request a genetic test for the child. Aside from the standard newborn screening, which detects phenylketonuria and congenital hypothyroidism, adoptive parents may want to plan for late on-set disorders, such as Huntington's Disease. Knowing that a child is at risk for certain conditions helps adoptive parents make decisions about care.

    Some adoptive parents may require genetic testing as a condition of adoption. It is up to the child's biological parents or adoption agency to determine whether or not to agree to the requested genetic test.

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    Recommendations by the ASHG and ACMG

    The American Society of Human Genetics (ASHG) and the American College of Medical Genetics (ACMG) have established a set of recommendations regarding pre-adoptive genetic testing policy. The general premise is that a child up for adoption should be medically tested like any other child of similar age. The genetic tests should be done for the benefit of the child and focus on diagnosis and treatment. Diseases which can be treated early in life should be screened for, such as phenylketonuria and congenital hypothyroidism. In addition, the child can be tested for conditions that are present in family members, such as cystic fibrosis.

    The pre-adoptive genetic testing policy of the ASHG and ACMG does not recommend testing children up for adoption for predispositions to diseases that occur later in life. Also, they are against the screening of physical, mental, or behavioral traits that are normal.

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    Potential Downside to Genetic Testing

    The downside to genetic testing, according to the ASHG and ACMG is stigmatization. A child with a genetic predisposition to a disease may not be adopted, or the child may be treated differently by the parents when they are adopted. There is a risk for discrimination later in life, if the genetic information is disclosed. For example, an insurance company may deny coverage based on a genetic predisposition.

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    1. "What are the Types of Genetic Tests?" Genetics Home Reference.

    2. "Pre-Adoptive Genetic Testing." Carthage College.

    3. "Genetic Testing in Adoption." The American Society of Human Genetics.