Category Archives: medical issues

DNA Testing, Adoption, and Outrage

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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…”

DNA Testing and Adoption: Filling In Many Missing Pieces

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Access to information about our DNA is now easily available. This genetic information is wonderful and daunting for all of us, and perhaps especially valuable for adoptees, whether US or international.

It’s relatively inexpensive ($99) now to find out what percent of your DNA comes from what population (Sub-Saharan Africa, Europe, South America, etc.). Adopted people of mixed background can get an accurate breakdown of information that they may never have received nor otherwise could find out. A friend of mine, adopted from Colombia, found out she is Mayan, Middle Eastern, and Spanish/French.

You can also find out about medical matters,  such as whether you are a carrier for cystic fibrosis, Tay-Sachs disease, sickle cell anemia, and many more. You can learn your genetic risk for diabetes, macular degeneration, Parkinson’s, and other serious conditions.  You can discover how your genetic makeup could impact sensitivity to certain medications and drugs, such as Plavix and Coumadin.

Because the DNA results are all part of a global database, it is possible to find previously unknown relatives, from close family to distant cousins. In terms of search, for adopted people, this is huge.

I drew the information above largely from the website of one of the most popular sites, www.23andme.com. The “23” refers to the number of pairs of chromosomes we humans have.

The testing is done via saliva, about a half teaspoon’s worth. Young children can be tested; the kit is modified for folks who can produce saliva but not spit.

Adoptees are often missing their own medical histories. Every visit to a doctor’s office can be a reminder of loss, guesswork, and uncertainty.  Writing “Adopted” and crossing out the Family History section can be frustrating. DNA testing eliminates some of the mystery, and fills in some of the blanks.

Of course, this genetic information opens a lot of potentially complex new doors.  Finding out about potential future medical conditions could be frightening.

I still will say, though, that information is power. These days, we all have to be really strong advocates for our physical and mental health. Genetic testing gives us more information to work with, and allows us to engage our health care providers more effectively.

I’ve offered to get the testing kits for each of my (young adult) adopted children. They are considering it, and I can understand the need to take some time to decide. I’m going to get the testing done on myself.  I’m not adopted, and I feel pretty confident that my ethnicity will be fully Irish. My mom died at 74 from cancer; she suffered with interstitial cystitis for years. Dad, now 83, is in great physical health, and also in the early stages of Alzheimer’s. So I have some sense for the possibilities, and, at this point in my life, would rather have the information than wonder about it.

Everyone should have that option.

DNA helix

Here are some interesting sites to explore and consider:

www.23andme.com

www.FamilyTreeDNA.com

www.mixedrootsfoundation.org/global-adoptee-genealogy-project

https://genographic.nationalgeographic.com

http://groups.yahoo.com/group/AdoptionDNA

Ethiopian Children and 2 Medical Issues

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A quick PSA about 2 Ethiopian-related medical issues. One is physiological, and one is cultural. For adoptive parents of Ethiopian children, this information ought to come from agencies prior to placement of the children. Parents and others may want to share this information with their pediatricians, dentists, and other medical caregivers.

The first is about codeine.

When children have tonsils or adenoids removed, they are often given codeine after surgery for pain relief. Ethiopians are more likely to be “ultra-rapid metabolizers” of codeine than other ethnic groups. This means that if the codeine is given to them in the wrong dosage, there can be serious harm done.

A quote from the FDA:

“These ultra-rapid metabolizers are more likely to have higher than normal amounts of morphine in their blood after taking codeine. High levels of morphine can result in breathing difficulty, which may be fatal.

From one to seven in every 100 people are ultra-rapid metabolizers, but they are more common among some ethnic groups. Twenty-nine percent of North African and Ethiopian populations are ultra-rapid metabolizers, and about 6 percent of African American, Caucasian and Greek populations are also affected.”

Here is more information, which you may want to print out and give to your doctor and dentist.

The second is about the uvula, that bit of flesh that hangs down in the back of the throat.

I’ve known a number of Ethiopian adoptees, particularly those adopted after infancy and toddlerhood, who have no uvula. Their uvulas may have been removed: here’s further information. There may or may not be any subsequent complications; those adoptees that I know have had none, but the pediatrician was surprised. This information may be worth sharing with your pediatrician.