Most doctors will ask about your family’s medical history at some point. Is there cancer in your family tree, heart disease, cystic fibrosis or other genetic concerns? Many people can turn to their biological parents to fill in gaps, but when you’re adopted, those answers can be difficult to find.
Fortunately, the field of genetic testing has come a long way. If you are adopted and having a baby, or adopting a child, there are ways to learn genetic history.
Family medical history
“When an expectant mother is pursuing an adoption plan, she fills out a self-reported medical background of herself and as much as is known of her family history,” says Jenna Smith, domestic program coordinator at Adoptions from the Heart. Depending on what she knows about her own family history, it may be incomplete.
State laws differ about what information the birth father provides. In Pennsylvania, the mother must provide the information she knows about the identity of the father and the adoption agency must make diligent efforts to locate and notify him and receive his consent to the adoption.
If he participates in the process, he is asked to provide his medical background.
In New Jersey, the birth mother can refuse to name the father but in Delaware, she must name him unless there’s a concern for her safety.
“A large number of adoptions today are open adoptions, and they can vary in openness,” says Smith. “But at minimum, medical information is provided.
“For those involved with adoption many years ago, that wasn’t the norm.”
Genetic testing
If a family history is not available, consumer DNA tests, like 23andme and Ancestry have helped many people who were adopted find biological relatives. While this can be helpful for general questions about the birth family, they are not medical grade.
“They might give you information about your ethnicity, but it’s not something you could use for medical decision–making,” says Karen Gripp, chief of the division of medical genetics at Nemours/A.I. duPont Hospital for Children. “You could end up with potentially harmful or inaccurate information from that type of testing.”
Gripp suggests an appointment with a genetic counselor, who can help choose tests and determine how much information you are comfortable learning. Some people may feel increased anxiety and stress from results that, in some cases, may be inconclusive or uncertain.
“They can clarify whether the family wants to know only conditions that are very high risk and serious, or if they want a broader list of potential risks. Can they handle more uncertainty in the results?” asks Gripp.
Newborn testing
All babies born in the United States are given newborn screening through a blood test, says Eileen M. Everly, attending physician at Children’s Hospital of Philadelphia. “The purpose is to catch, as early as possible, severe conditions, which, if untreated, can cause very serious illness and even death,” says Everly.
For example, babies born with cystic fibrosis would benefit from immediate treatment.
“That’s a matter of course for all infants, regardless of who is taking them home,” she says. “There isn’t any further recommended testing of infants if they are being domestically adopted.”
A blood screening detected a rare but fatal chromosomal disease in Nicole M.’s adopted son, but they only had family medical history from the boy’s birth mother in Pennsylvania. His birth father had not been identified.
“They said it’s possible he’s just a carrier, but the only way to know that with certainty is to test both biological parents,” says Nicole, 47. “Without access to his father’s DNA, we won’t know whether he will develop the disease.” Now a year old, he will continue to be evaluated by a neurologist every three months until he is 2, then once a year thereafter. “There is no cure and almost no treatment,” says his mom, though she doesn’t dwell on the what–ifs. “We are aware of it and follow up with all the doctor’s appointments, but he’s such a healthy, happy, thriving baby that it makes it easier to put it out of your mind.”
Nicole recognizes that it comes with the territory with adoption. “There are certain things you just don’t know and you’ll never know,” she adds. But she acknowledges that even when someone does know family medical history, an illness might creep up without anyone knowing if there is a family genetic connection.
Carrier testing
For prospective parents who were adopted and don’t know their family health history, carrier testing can tell whether you carry a gene mutation for certain genetic disorders. Having the screening done before or during pregnancy allows you to find out your chances of having a child with a genetic disorder.
“For many diseases that affect newborn children, parents can be carriers,” says Gripp. “Examples are cystic fibrosis or sickle cell disease where parents can be a carrier and be unaware, but have a child with a very severe medical condition.”
Carrier testing wasn’t widely available when Patricia R., who was adopted as a child, planned to start her family in the 1990’s.
“I had no family medical history until I was about 19, when, through old-fashioned detective work, I found my birth mother, ” recalls Patricia, 53, who lives in Philadelphia. “But, even after finding her, I don’t know how accurate the health information was that she gave me.”
Patricia had a daughter who was diagnosed with kidney issues when she was 3, and later, had gall bladder failure and thyroid cancer. Even with what Patricia’s biological mother told her, and her own health history, she doesn’t know if genetic testing would have predicted her daughter’s issues.
“It is important to get a good health history to know what is in your past, but when it comes to genetic testing, I have mixed views,” she says. “I think that’s a personal choice. It’s great to learn information that you can prepare for, but at the same time, I’m the type of person who would worry so much about it, all the time?”
Terri Akman is a contributor to MetroKids.
