Adoption and Family Health Histories
On my doctor’s medical forms I was listed as “child adopted – no record.” There was all this
space for other people to fill-in their health histories, but mine was always left blank. I would
hear people’s [health] stories and wonder, what does that mean to me? Could I die at age
twenty-five of a heart attack? Where do I fit in the picture?
Jessica – age 20
“Knowing your family’s health history can save your life,” says Dr. Eric Whitaker, past
Director of the Illinois Department of Public Health. “By having the information readily
available, doctors can more closely monitor a person’s health for common diseases, such as heart
disease, cancer and diabetes, or even rare disorders like sickle cell anemia or hemophilia, that
can run in families.” For the estimated 200,000 adoptees in Illinois, the important work of
compiling a family health history may seem like an impossible task. Even with an open adoption
where the adoptive parents and birth mother have shared their identities, the ability to ask blood
relatives about their health histories may be limited.
Although adoptees may be at a disadvantage in tracking their family health histories,
there are many individuals living with their birth families that lack knowledge of their health
histories. Simply being aware of the importance of family health histories provides adoptees
with an opportunity and motivation to gather whatever information is available.
It is good news for adoptees that while they may not have a complete history, any family
medical information can be helpful. An adoptee health history search can begin by asking
adoptive parents for information they received about the birth parents and their families at the
time of the adoption. By Illinois law, if known, non-identifying information including race,
ethnicity, country of origin, and detailed medical and mental health histories is to be reported to
the adoptive parents by the placement date. In adoptions with private or public agencies, adult
adoptees can check with the agencies to see what health history and other non-identifying
information they have on file. Adoptees also have the option to search through a confidential
intermediary service.
In open adoptions, depending on the situation, there may be opportunities for adoptees to
track their family health histories. If adoptees have a relationship with the birth parents or are
aware of their identities, they may feel comfortable asking them health history questions.
The Illinois Adoption Registry can be an excellent resource for adoptees. Updated
medical information may be exchanged confidentially if the adult adoptee and a birth parent or
an adult birth sibling that was also adopted, join the registry and are mutually consenting.
Additionally if a birth parent is deceased then an adult birth sibling that remained with the birth
family can exchange medical information. With mutual consent the adult adoptee could
potentially receive health information from both sides of the birth family. Adoptive parents may
receive medical information from consenting birthparents until the adoptee is twenty-one and
legal guardians may also receive medical information in the adoptee’s behalf. But all of this is
contingent on registration and participation in the registry. Continuing birth family participation
in the registry can be a real plus since most medical problems do not manifest until people are
older.
A new Illinois law makes it easier for adoptees to identify their birth parents. According
to the law, adoptees born before January 1, 1946 can now request a non-certified copy of their
original birth certificate, and as of November 15, 2011, all adult adoptees (even those born on or
after January 1, 1946) may request birth certificates. It is advisable for adoptees to consult with
an adoption professional and/or confidential intermediary prior to deciding whether to contact
birth parents.
Even if an adoptee only knows their racial and ethnic heritage, that information can be
beneficial. Just like medical problems that run in families, some diseases are more common in
certain ethnicities. Genetic tests are available to screen for many of these diseases. Genetic
ancestry testing is available commercially, which can help individuals identify their countries or
regions of origin, as well as ethnicity in some cases. However, this type of testing is not
considered “diagnostic” and should be used for educational purposes only.
Other useful family health history information can come from the adoptive family.
Because of the importance of diet and lifestyle, adoptees may want to consider tracking two
health histories.
It is vital that adoptees tell their physicians that they are adopted and provide them with
whatever medical information they have. A skilled physician can respond to questions and
concerns and offer tests and screenings when appropriate. Although it may take some effort,
there is no reason why adoptees cannot realize the many benefits of family health histories.
Additional links to adoption resources and information:
Child Welfare Information Gateway
National Adoption Information Clearinghouse
Chicago Tribune Article about Adoption Law
(Thanks to Marsha Raynes, Director of Project Esther: The Chicago Jewish Adoption Network
of Jewish Child and Family Services for sharing her considerable knowledge and helpful
insights. And with appreciation to Elyse Flack, Director of Stars of David International, for her
contributions to the project.)