What about the Rights of Adoptees?

by Luanne

When the kids were little, my husband and I were very engaged in adoption events and issues, but as the kids got older and we followed them in wrestling and roller hockey and dance and voice lessons, adoption lost its place in the day-to-day shuffle of work and school and after school activities.

This changed when Marisha and I began this blog.  I revisited the world of adoption via the internet, reading about the experiences of others, including blog posts and articles by adult adoptees.  One of the issues I see mentioned often is one which I believe looms large in the lives of adoptees–the lack of medical (family) history.  The majority of adoptees grow up without access to their birth records or the ability to track down birth parents or, in fact, any biological relatives.

by Adopted the Comic

While this is changing in the case of domestic open adoptions, children are still being adopted without adoptive parents having access to those records and adult adoptees are still being kept from their records.  The law is different in each state.  Many states have a mutual consent policy, which also varies state by state.  The bottom line is that it is still impossible for the majority of adoptees to get identifying information about their own births.  Many groups and individuals are fighting to get these laws changed and open up records to the adoptees.

In the case of international adoptions, changing the laws in the United States to allow adoptees access to their birthright knowledge will not help them.  In some cases, such as in the case of adoptions from China, it might not be possible to provide this information.

STILL . . .

It’s a tragedy when the information is sitting in a file and the person to whom it rightfully belongs cannot access it.

Some adoptees are resorting to DNA testing today to try to find biological connections.  This sounds like a good idea, but it can be a less than helpful and possibly upsetting tangent as sometimes the relatives contacted can be uninterested in meeting new “family” members.  They are often so loosely connected by biology that they can barely be seen as “relatives.”  As a New York Times article points out, “Elizabeth Bartholet, an expert on adoption at Harvard Law School, said the proliferation of testing highlights the need for broader access to adoption records. In the meantime, she says, adoptees would be better served by nurturing the relationships they already have.”

She makes a good point, but I understand the desperation that can lead to this search.  I’ve seen what happens when adoptees don’t know their familial medical history and how utterly inadequate the medical profession is at dealing with adoptee medical concerns.  The attitude of many doctors on this subject isn’t much better than their system.

I’d take one of my kids to a new doctor and when they asked about family medical history, I would say he/she is adopted and they would write it down.  That was the extent of their professional interest.

Both my kids had unique medical issues when they were growing up, and I can’t remember doctors thinking outside the box, looking to see if there were conditions or illnesses which are generally only diagnosed with the help of family history which Marc or Marisha might have.

The truth is that family medical history is on those medical forms we fill out for a reason.  Knowing the family history helps to make diagnoses.  Without that crucial component of a diagnosis, illnesses go undiscovered and untreated.

Since these histories might not be available, even in Korea, what could be used?  How about something that is being done all the time now?  Genetic testing!  I asked a geneticist at Mayo Clinic why they don’t give adoptees genetics tests and she had a stock answer that there are too many possible diseases.  The truth is that if a doctor is looking at a set of puzzling symptoms in an adoptee, then wouldn’t it make sense to do genetic testing for rare genetic disorders or illnesses?


The other answer is that it’s too expensive.  Why don’t adoptees have the right to the same quality of medical care as non-adoptees?

This is 2012 and not 1950 any longer.  Adoption records should be unsealed and the secrecies of adoption promulgated in the dark ages of the mid-twentieth century should be abolished.   Then, as a society, we need to go a step further for those adoptees without records and promote genetic testing for adoptees (and adoptive parents on behalf of their children) who wish to be tested.

What do you think?  Do you agree with me or disagree?  Take the poll and let DWLA know what you think about this topic.


  1. Our daughter was adopted from China, so there is no chance of getting her medical records. I have always chosen medical professionals who are very familiar with international adoption as a result.

    • That a great idea to look for doctors who are well versed in international adoption. We didn’t live in an area when the kids were growing up where we had that option. Even the specialists we ended up seeing didn’t know anything about adoption issues. They thought as they were trained in medical school, only using the diagnostic tools which are part of the usual method–and if one (family history) was missing, oh well, do it without it and don’t think outside the box. I’m not seeing much difference now that my kids are adults either. Thanks so much for your advice for others, jmlindy!

  2. Lisa DeNike Ercolano says:

    Like jmlindy422’s child, my child was adopted from China, where the majority of the children available for adoption were (sorry to use the “a” word) abandoned. That means there is no paper trail leading from the birth parents to the child. Ideally, all children would have access to their medical history (at least that of their birthparents, if not extended blood relatives) but in the case of the Chinese children, I cannot see that happening.

    • Lisa, that’s why I feel that adoptees should have genetic testing more widely available to them when they present with symptoms and diagnosing is difficult.
      The other thing is that while some children will not be able to have any access to this information (even if the laws were changed in the US), the ones who are only limited by old (and old-fashioned) laws in this country should have it available to them. The medical information. And of course for minors that means the adoptive parents.
      Once we all end up in the DNA database (I feel that is where we are heading) this will be a moot point, I guess.


  1. […] yesterday’s post by Luanne, “What About the Rights of Adoptees,” we posted a poll which is still open for voting on the issue of adoptee rights.  We had […]

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