DNA Testing, Adoption, and Outrage

Imagine a room with a bunch of nice, older ladies. They are mostly smiling.  A few are cranky. I’m in there too, along with other grandmas. (It still shocks me I’m a grandmother, but Zariyah will be 7 in October, and I’ve come to terms with it.  Best thing ever.)

Imagine that some of these nice, older ladies are fundamentally denied two basic civil rights: access to their own original birth certificates, and knowledge of their medical histories. Imagine that your mother or grandmother has no idea what contraindications exist for medications. Imagine your grandma’s painful medical condition that could have been easily prevented with proactive treatment.

I tend these days to first think of adoptees as being not children, but young people, because of my own young adult children. I need to be more inclusive in my thinking and acknowledge more fully the adoptees in their 40’s, 50’s, 60’s, 70’s, and beyond. That’s especially relevant around medical histories.

I posted yesterday about DNA testing and its value to adoptees. I received an absolutely on-point comment from TAO, a blog which you should follow. Now.

Here’s a quote from her comment:

“I am glad there is genetic testing available for many of the same reasons you note and while I don’t disagree with the statement “Finding out about potential future medical conditions could be frightening.” yet, I can’t begin to tell you how frightening actually living through a medical emergency without FHH is, and that reality plays out for adoptees more often than people want to believe.”

Family Health History, or First Family Health History, should be a given. TAO (The Adopted Ones, from the Baby Scoop era) is so right, and has put my delicate statement “Finding out about potential future medical conditions could be frightening” into the light of day where I now say:

Denial of medical histories is an outrage. Knowledge of one’s medical realities is so taken for granted by those of us who don’t have to think twice about it.

Knowledge of one’s medical history can be a matter of life and death. Certainly that knowledge can hugely impact the quality of one’s life.

And yet there are hundreds of thousands who ARE NOT ALLOWED to have this information.

Yesterday I was polite, and provided DNA testing information as if I were giving out lovely little flowers to brighten your day.  I have no doubts that DNA testing is valuable, and provides great information.

But today, I am angry. US and international adoptees, whether they were adopted today or 75 years ago, should have access to their original birth certificates: there remains no doubt in my mind about that. They should also have as full, accurate family health history as possible. It’s an outrage that they don’t, and that they have to struggle to get it.

I would love to see more adoptive parents, grandmothers, grandfathers, adoption attorneys, adoption agency workers, and medical professionals joining in outrage.

TAO noted also in her comment to me that “not all genes have been found for common diseases let alone the estimated 7,000 rare diseases that affect 1 in 12 Americans…genetic tests are a poor substitute for a good FFH.”

Excellent point. Genetic tests are helpful on some level, no doubt. But genetic tests, as they exist now, are no substitute for a thorough, accurate first family health history.

From TAO’s “About” page:

“As you will notice as you read our posts both of us were impacted in different ways by the lack of current updated family health history because of being adopted.  While having the family health history may not have changed the course of our diseases – the knowledge in my case may have prevented two life threatening events, and for shadowadoptee the knowledge that she would go blind sure would have been nice to know…”

3 thoughts on “DNA Testing, Adoption, and Outrage

  1. Just popped on your site. I have been thinking about genetic testing because I have no family history due to my adoption. My birth parents are from Central America. As a child I had minor medical issues and some today as an adult. I have three children now and I feel it’s best for them to know their health history. I also hate going to doctor and filling out a chart with little to no info. Then I would have to explain to doctor that I was adopted. I just want to know if genetic testing is the best route? Thanks

  2. Thank you so much. There is no reason why nothing has been done and how parents are lulled into a false sense of security by being given a filled out FHH history at the time of adoption, that is pretty much out of date without years. The FHH history that would have helped me the most happened AFTER I was adopted.

  3. I’m glad you are angry about denying adopted adults access to their own original birth certificates, Maureen. I am too! As you know, trying to get states to update these discriminatory laws is like fighting a world war. The political games that are played to obstruct these equal-access laws are so, so frustrating. It is an outrage — I just wish more people recognized that fact.

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