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  Adoptees and Genetic Information

By Mary Carol Randall, MA

Reviewed By Joan Burns, MS, MSSW



For each of us, untangling the mysteries of our own individual health — history, concerns, strengths, and problems — can be complex. For adoptees, the situation is doubly challenging, because a great deal of family medical history may be unknown.

 
 
 

What Does Your Physician Need to Know?

If you are adopted adult, be sure to tell your physician. Likewise, if you are the parent of an adopted child, be sure to inform the pediatrician. This may seem self-evident, but people have strong opinions on whether to talk about their adopted status or keep it entirely confidential. There are cases where even the family doctor has been uninformed that a child is adopted.

Physicians rely in part on family history to alert them possible problems, and may even order certain diagnostic tests based on family history

It is important to take your doctor into your confidence because physicians rely in part on family history to alert them to possible problems, and may even order certain diagnostic tests based on family history. Saying that there is no history of cancer in your family, for example, has different implications if you are speaking of your biological or adopted family.

It can also be helpful for a physician to know not only which genetic conditions have occurred, but also age of onset. For example, early onset breast cancer, colon cancer, or heart disease can indicate different screening plans than if the conditions had appeared later in life.

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Your Adoption Records

Adoption records usually contain what is called nonidentifying information, such as the race, ethnicity, and age of the birth parents, as well as something about their educational levels, occupations, interests, skills, and medical history. Identifying information, such as names and addresses, are usually not included in adoption records. Policies vary from state to state about how much information is collected, and how it is maintained and disclosed. Generally, because medical information is not updated after a child or infant is relinquished for adoption, the information in your adoption file may be outdated.

For any number of reasons, past records may contain minimal information. Agencies, private facilitators, or lawyers counseling birth mothers do not always place sufficient importance on complete histories, and birth mothers are sometimes hesitant to pass along what they see as personal information. They may also be unaware that it is important to provide information about their own parents and other relatives, as well as their own history. Finally, if the birth parents develop a genetic health condition years after relinquishing a child for adoption, they may not realize the importance of updating the records.

There may be some medical information in your record that you were unaware of, especially if your file contains information about both birth parents and any extended family

Even if your records are not as complete as you might wish, they are a place to start. There may be some medical information in your record that you were unaware of, especially if your file contains information about both birth parents and any extended family. It is also important to know your true ethnic and racial heritage, because some ethnicities are more likely to be affected by certain conditions; for example, Ashkenazi Jews are at higher risk than the general population for breast and possibly colon cancer. Certain genetic disorders that can be screened for at birth, such as G6PD deficiency, are more common in other ethnic groups. Many such diseases can be detected early and result in fewer complications if the physician knows there is a family history, or is aware there may be a reason to do early screening.

 

More on Ashkenazi Jews

 

Individual states have different regulations about the rights of adopted adults, adoptive parents, birth parents, and other birth relatives to gain access to information. There is no unifying federal legislation governing this information. The state statutes can be found online through the National Adoption Information Clearinghouse (NAIC), a government resource on all aspects of adoption. NAIC is a service of the Children's Bureau, part of the Department of Health and Human Services. (See Resources, below.)

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Is Medical Information About Siblings Helpful?

There are situations where two or more siblings are adopted together or, even if they grow up in different homes, still maintain contact. Even if you don't know much about the medical history of your birth parents, you may know a great deal about your siblings.

This information can be useful to your physician. For example, some diseases are actually more likely to be seen in your siblings than in your parents. One example is hemochromatosis, which is a genetic iron storage disease that is very common in the US.

Some genetic conditions are more likely to be seen in your siblings than in your parents

In addition, the more relatives about whom you have information, the easier it is for you and your physician to identify your genetic susceptibility to certain diseases. For example, if a woman's mother, but no other relatives, has breast cancer, there is a different risk level than if her mother and three sisters also have breast cancer.

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Should You Search for Your Birth Parents?

Deciding whether or not to search for birth parents is is a question that adoptees must answer for themselves; however, discussing the question with family, close friends, a physician or a genetic counselor can be helpful.

NAIC estimates that there are more than 60,000 Americans searching for birth parents or children whom they were separated from

NAIC estimates that there are more than 60,000 Americans searching for birth parents or children from whom they were separated. Some may be searching out of curiosity, emotional reasons, or the need to share genetic and medical information. In many states, judges will only accept compelling medical reasons as sufficient grounds for issuing a court order to open sealed adoption records.

If you decide to search, you may want to evaluate your reasons. If your search is successful, do you want to have an ongoing relationship with the person you find? Are you primarily seeking medical and genetic information? Research shows that once birth relatives are found, they usually want to maintain contact, so if you are interested in information, but not contact, you may want help from a third party, such as a search consultant.

You may also want to find a support group. This can provide you not only with emotional support, but also with helpful ideas about how to search. NAIC has contacts for both national and local support groups.

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Searching: How Is It Done?

The court requires "good cause" before unsealing records; good cause can include compelling medical reasons

If you decide to search, there are many possible strategies, including using registries, working with confidential intermediaries, or obtaining a court order. Most states in which adoption records are sealed will allow adoptees to petition the court to receive identifying information. The court requires "good cause" before unsealing records; good cause can include compelling medical reasons.

Several states use an affidavit system, in which parties can place prior written consent for release of identifying information in the adoption file. It is important for adoptees, once they become adults, to go back and place such an affidavit in their file, if they are willing to be found by their birth parents. If they do not, and they are in a state that requires mutual consent, their birth parents could be trying to contact them, but not be able to because the file did not contain affidavits from all parties.

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Now What?

Perhaps you have chosen not to search. Perhaps you tried, but your search was unsuccessful. What does this mean, in terms of your medical well-being? There are some extreme situations, such as needing an organ donation or bone marrow transplant, where the chances of success are much better if the donor is a close relative. However, these situations are not common. For the average person, and from a purely scientific standpoint, the importance of knowing the medical history of your birth parents is most important as an indicator for the need for early screening. Once a genetic condition is diagnosed, treatments will depend largely upon the individual situation.

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Resources

For more information on your state's adoption laws, you can contact your State Adoption Specialist. For a referral, contact the National Adoption Information Clearinghouse (NAIC), by sending email to naic@calib.com. You can also use this e-mail address to ask for information about support groups in your area.

NAIC also produces a number of documents, including the "Access to Adoption Records" fact sheet.

 

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