I recently read a book that highlighted a character who was adopted and searching for her birth mother. She had centered her whole life, including her career, around the idea of doing everything she could to make her birth parents proud. Even though she had never met her birth parents. This character struggled with the idea of her parents abandoning her and not loving her enough to keep her. Because of a health scare, she started wondering if she should try and find her birth parents. By the end of the book, she had tracked down her birth mother. Her experience with her birth parents was not what she had hoped for, but it did make her realize that what mattered was who she had become because of all the influences in her life.
A person who is adopted may have many questions they think about during their life, but it may be even more difficult when it comes to health concerns. To not know if you have a family history of a health concern or genetic condition may be disconcerting and anxiety provoking. As a genetic counselor, one of the most important parts of our counseling session involves asking questions about your family history. We assess your family history for genetic conditions, hereditary syndromes, and familial traits. Regardless of what medical specialty a genetic counselor works in, they always ask their patients about family history.
If a large part of genetic counseling involves family history, what happens if a patient is adopted and does not know their family history? A genetic counselor will see what information, if any, the patient knows about their biological family to complete the family history portion of a genetic counseling session. If the patient does not have any information, a genetic counselor can still assess the patient’s medical history and offer genetic testing. For example, if a patient has been diagnosed with breast cancer in her 30’s but does not know her family history, she can still pursue genetic testing for hereditary breast cancer gene mutations. In addition, if a patient is evaluated by a geneticist for a genetic condition and meets requirements to pursue genetic testing, even without a family history it is appropriate to pursue testing.
In circumstances of pregnant patients who do not know their family history, there are genetic screening and testing options that all women are offered in pregnancy. Carrier screening for hereditary recessive genetic conditions in which both partners have to be carriers of a genetic condition in order for a pregnancy to have a 1 in 4 risk of inheriting the genetic condition can be offered before or during pregnancy to all patients. If both parents are found to be carriers of the same genetic condition, diagnostic testing in pregnancy can be performed to determine if the pregnancy is affected by that condition. In addition, diagnostic testing can be performed to analyze the pregnancy for chromosome abnormalities or test for genetic conditions if a physical abnormality is seen on a fetal ultrasound. While it is helpful to have information about family history, it ultimately does not change genetic screening and testing options in routine pregnancies.
There are many genetic testing companies now offering genetic screening to everyone regardless of family history, for health concerns like high cholesterol and cardiovascular disease, cancer, and blood clotting disorders. If a person who is adopted is interested in learning more about their genetics either for themselves or for their children, there are many clinical genetic tests that can be performed to analyze certain genes associated with various health concerns. While direct to consumer tests are helpful for ancestry information or select gene mutation analysis of certain health concerns, it’s important to have any positive results confirmed through clinically certified genetic testing companies and with your doctor. If you are adopted and would like to know more about your genetic heritage, or have been personally diagnosed with a health concern that your doctor recommends to have confirmed by genetic testing, please contact AT-GC to meet with a genetic counselor.