Adoption & Genetics
Biological family members share their genetic information. Most individuals recognize traits that run in their family, such as red hair, freckles, body type and facial characteristics. Common complex diseases, such as asthma, diabetes, and heart disease, can also run in families.
Therefore, health professionals often rely in part on a patient's personal and biological family medical history in order to help establish disease risk. Health professionals may also offer or order specific diagnostic tests or genetic tests based on such histories. Some people choose to take preventative measures or increase disease surveillance when indicated by a family history. Not knowing biological family medical information can be frustrating for adopted adults when they are faced with health care decisions.
In addition, it is well known that certain genetic conditions occur more frequently in people of particular ethnic backgrounds. For example, people of Ashkenazi Jewish ancestry are at increased risk over the general population for Tay-Sachs disease, Canavan disease, familial dysautonomia as well as other Ashkenazi Jewish diseases. Sickle cell anemia occurs more frequently in Africans-Americans, while cystic fibrosis is more common in Caucasians.
Some adopted adults decide to find out information about their birth parents and extended family, but this decision is a personal and often difficult one. The adoption record is typically a good place to start. Adoption records may contain non-identifying information about birth parents and their family members such as race and ethnicity, ages, educational levels, occupations and skills, interests, and medical histories.
Policies vary from state to state about what information is documented, maintained, and able to be disclosed. At times, birth parents have not completed their file. And, even if complete at the time of adoption, medical information is typically not updated over the years. As some medical conditions may not develop until mid/late adulthood, this information may not be known.
Even if the adoption record is outdated or incomplete, it may still be a place to start. This is because...
- Adoption records often contain true ethnic and racial heritage. This is important as some genetic conditions are more common in people of certain racial or ethnic backgrounds.
- At times, adoption records contain some useful biological family medical information.
Collecting Family Medical History Information
It is most important to collect information on first degree relatives, which include birth parents as well as biological full siblings. Second degree relatives are also important, which include grandparents, uncles and aunts, nieces and nephews, and half-siblings. Information on third degree relatives, such as cousins, great-uncles and great-aunts, can also be helpful.
If known, it is helpful to collect and document:
- List medications biological family members are taking.
- List the formal names of the diseases.
- List the age of disease onset and gender of affected biological relatives.
- List the ethnic backgrounds of biological relatives.
- List birth dates and death dates of biological relatives.
- In some cases, it may be helpful to obtain copies of medical records of a living or deceased biological relative.
How Common Is It?
It is estimated that over 1 million people are adopted in the United States.
Genetic Testing
There is no specific clinical genetic testing for adopted adults. In the absence of biological family history information, genetic testing options are based on the person's personal medical history as well as suspected or known ethnic background.
- Ancestry testing may be of interest to adopted adults with limited information about their ethnic background. Ancestry testing is not intended for medical purposes, but for informational purposes only. Ancestry testing is widely available online (over the internet). Go to the Tests tab to link to providers, compare providers, and read provider reviews.
There is no specific clinical genetic testing for children in the adoption process. The American Society of Human Genetics (ASHC) and the American College of Medical Genetics (ACMG) have issued a joint statement in which they "support genetic testing in the adoption process if it is consistent with preventive and diagnostic tests performed on all children of a similar age, if it is generally limited to testing for medical conditions that manifest themselves during childhood or for which preventive measures or therapies may be undertaken during childhood, and if it is not used to detect genetic variations within the normal range." Their recommendations are further outlined in Genetic Testing In Adoption. The National Society of Genetic Counselors (NSGC) supports this statement with some additional comments in their Genetic Testing and Adoption Position Statement.
A trained genetic professional can discuss the benefits and limitations of genetic testing, coordinate testing and interpret results in the context of personal history.
- A board-certified genetic counselor is available by telephone.
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Last Reviewed January 28, 2010