My kids deserve their family medical history

Our son P is 24, out of college and working. He has always been the most nonchalant about adoption of our two kids. He may certainly change as time goes on, but to date he has had virtually no interest in obtaining more information about his birth and family or in searching – with one exception: his medical history.

While in college, P began to have some intense joint pain that was quickly determined not to be related to physical activity or injury. Seeking the cause sent him on a medical journey that lasted all through college and into the year following graduation.

His first visit to the doctor led to referrals to specialists and tests. Every few months after a flare of the pain, a new round of visits and tests would begin. By the time P graduated, a host of problems had been ruled out, but no diagnosis had been made.

Once home, a flare sent him into a lot of pain, and the cycle of medical appointments started again, this time with physicians closer to home. All of the paperwork he had done so many times before in college had to be redone, of course. As we discussed how the appointment went, P made a point of telling me that he was frustrated with his lack of family medical information. All I could say was I'm so sorry.

What a lame reply - lamer still that decades of adoption haven't made it standard practice to gather as much genetic family medical history as possible. I may be oversimplifying a complex issue, but I have never understood why this information wasn't available to us (when our children were young) and them (now that they're adults). Do adoption facilitators not ask for it? Do women who surrender children not want to provide it?

I have never learned the cold hard facts about this, but I've heard a lot of opinions: Doctors don't really use that information. You don't fill out medical forms that often, so it's not critical. It would be impossible to obtain from mothers who fear loss of privacy and anonymity. The laws around medical information are too complex. Even if you can get it for the mother, you probably won't for the father, so why bother?

OK, let's say all of these have a kernel of truth. That, in my opinion, is no reason to dismiss the possibility of obtaining this information, it's a reason to sit down and figure out how to make it happen. Yes, in the US HIPAA laws make handling medical information a complex issue; there are undoubtedly similar laws in other countries. However, there are also laws that define what constitutes identifying and non-identifying information and how it can be handled. There must surely be a legal way to gather this important information without the identifying information that would put it out of bounds for adoptees.

The fact that we neither gather it nor try to is, I think, a good example of adoptism: treating adopted people differently than the non-adopted. It exists in many forms: in closed records, in the way the media treats adoption and adoptees, and in discrimination in school and the workplace. Although a genetic family medical history may seem to be a small issue in light of some of the larger ones, it is one that could be addressed if adoption practice had the will to address it.

My son would have appreciated his family's medical history, even if it shed no light on the situation that brought him to so many doctors (which has blessedly been diagnosed and resolved). At a bare minimum, being able to provide some of his genetic family history would have removed that layer of adoptism from an already stressful situation. It's a no-brainer, really.

I am, of course, looking at this as a mom who wants to do everything possible to remove adoptism from her kids' lives. I would love to hear the opinions of others on all sides of this, adoptees, adoption workers and those with medical and legal knowledge around this issue especially.

My kids deserve this information. All adoptees deserve it. I would love to see the adoption community add it to the issues we are fighting to change.


Cynthia said…
so very true daughter is 25 and will soon go off my oh so wonderful insurance...what then, what risks are out there for her to miss as she cuts health cost corners. which little aches pains and worries are most important to follow, to treat, which ones are nothing critical and can be ignored more easily. too much unknown. we have both just submitted our saliva to 23 & me...maybe our dna with give us information. her's for her young thing questions and mine for my oldster worries. we'll see if this can help adoptees learn about worth-worrying about health concerns.
Exactly, Cynthia. I am absolutely convinced that we CAN do better with this, but I'm equally frustrated at the lack of will and/or excuses to do so on the part of adoption agencies and facilitators.

Just seems sensible to me to fix the small things we can control while we debate the larger issues.

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