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  Birthparents and Genetic Information

By Mary Carol Randall, MA

Reviewed By Joan Burns, MS, MSSW



Individuals who are considering relinquishing a baby for adoption, or who did so earlier in their life, face special considerations about how much medical information to convey, and how best to do so. Most physicians say that the more they know about their patient's medical history, the easier it is to determine what kinds of medical screenings are needed. By knowing that there is a genetic predisposition, it may even be possible to prevent the onset of certain conditions. As a general guideline, tell as much as you possibly can about your own, and your family's, medical history and ethnic heritage.

 
 
 

Planning Ahead

Placing a baby for adoption is an emotional experience for most birthparents; a choice made because they believe it will be best for the child. One gift that birthparents can give is to put as much medical information as possible into the file. This information should include the medical history of not only the birth parents, but also of other relatives. For example, a young birthmother may have no heart trouble, but may come from a family where both of her parents, an older sister and several aunts all have heart trouble. This knowledge would benefit her child, and her child's doctor.

Because some ethnicities and races are more likely to be affected by certain conditions, it is also important to document your true ethnic and racial heritage. For example, breast and possibly colon cancer are more common in Ashkenazi Jews. Other conditions that can be screened for at birth, such as G6PD deficiency, are also more common in certain ethnic groups. These conditions can be detected early and followed with fewer complications if your child's physician knows there is a family history of the condition. If your baby is biracial, be sure also to document it in the file.

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Can You Update the File Later?

What if you discover, years after you relinquish a child, that you have a genetic health condition? This could happen in any of a number of ways:

  • You placed information in your child's file based on your own health at a young age, and later developed an adult-onset condition. (Many genetic conditions, such as adult onset diabetes, certain cancers, certain kinds of heart problems, do not appear until middle age, or even later.)
  • You have another child later, and that child develops a condition, such as cystic fibrosis, which indicates that all siblings should be tested.

If one of these circumstances has occurred in your life, you may want to update your child's adoption records. Although experts agree that updating medical information in the files of adopted children is extremely important, this procedure is rarely done. In fact, this is such a hot topic that the National Academy of Sciences and the University of Maryland School of Social Work recently held conferences on the topic of how to gather, store, and transmit genetic information in ways that would be beneficial to all concerned.

Updating medical information in an adopted child's file can be extremely important to the health of the child

If you have new information to pass on to your child, you can contact the agency through which the child was placed, ask your physician to contact the agency, or ask about the rules in your state by contacting 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. If you are facing this kind of difficult situation, you may also want to join a support group or talk with a genetic counselor.

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Should You Search for Your Birth Child?

This is a question birthparents must answer for themselves. NAIC estimates that there are more than 60,000 Americans searching for birth parents or children whom they were separated from

Deciding whether or not to search for a birth child is a decision that birthparents must make for themselves. 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, for emotional reasons, or from a need to share genetic and medical information. In many states sharing medical information is the only reason judges will accept as sufficient grounds for issuing a court order to open sealed adoption records.

If you decide to search, you may want to ask yourself what your reasons are. If your search is successful, do you want to have an ongoing relationship with the person you find? Are you primarily seeking to share medical and genetic information? If so, you may want to have a third party, such as a search consultant, help you.

The situation is different depending on whether the child you relinquished is now an adult or still a minor. Some birth parents choose to search while the child is still a minor, either for emotional reasons or because they feel a compelling need to share genetic and medical information. If they find the child, they may then choose not to make contact, or to contact the adoptive parents to see about arranging contact. Sometimes these experiences are positive, and sometimes they are negative. Birthparents need to prepare for either outcome. Support groups can help. They can provide not only emotional support, but also with helpful ideas about how to search. NAIC has contacts for both national and local support groups.

Placing a letter in the child's file is one approach to updating medical information, however it may be years before the information reaches the child
One option frequently available to birth parents is to place a letter in the child's file. This is one way you can update medical information, as well as any other information you may wish to pass along. However, it may not be found unless the child decides to search for you and contacts the agency to request the file. Therefore, this may not be the most direct approach for conveying crucial or time-sensitive medical information.

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Searching: How Is It Done?

Placing a letter in the child's file is one approach to updating medical information, however it may be years before the information reaches the child

If you decide to search, there are many possible strategies, including using registries, working with confidential intermediaries, or obtaining a court order. In most states in which adoption records are sealed, 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 birthparents to place such an affidavit in their file if they are willing to be found by the child they have placed for adoption. If they do not, and they are in a state that requires mutual consent, the child could be trying to contact them, but not be able to because the file did not contain affidavits from all parties.

There is no unifying federal legislation governing information access rights of birthparents, other birth relatives, and adoptees. Individual states have different regulations.

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Resources

For more information on your state's adoption laws, you can search the National Adoption Information Clearinghouse (NAIC) (http://www.calib.com/naic) or contact your state adoption specialist. For a referral, contact NAIC, by sending email to naic@calib.com

 

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