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Untitled Document
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| Resources |
| Birthparents
and Genetic Information |
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By
Mary Carol Randall,
MA
Reviewed
By Joan Burns, MS,
MSSW
Last
Updated August 12, 2000
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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.
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Planning Ahead
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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?
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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.)
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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.
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| Updating
medical information in an adopted child's file can
be extremely important to the health of the child |
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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?
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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 |
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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.
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| 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 |
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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?
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| 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 |
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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
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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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