Access to Family Medical History

By Michael Hill

Adoption STAR’s Associate Director Michael Hill shares details of an interesting conversation he had with an adult adoptee about international adoption and access to birth family medical history.

Once folks know you’re touched by adoption, it affords you an opportunity to engage in a wide variety of adoption-related conversations. Sometimes these conversations come unexpectedly, as was the case for me this past weekend.

“Liz” is a lovely young woman who I met just a few months ago. We see her at least once a week, as she works at a place my kids and I enjoy frequenting on the weekends. This past Saturday, “Liz” approached me to say hello. We engaged in the typical small talk and catch up chat regarding events of the last week. We then had a conversation about cultural influences that impact child rearing/caregiving philosophies, and this is where the conversation took an interesting, unexpected turn. “Liz” disclosed that she was adopted, as was her brother. Both of them were adopted internationally – “Liz” when she was quite young, her brother when he was a bit older.

This young woman then proceeded to share more intimate details of her family and their experiences with international adoption. She said she’s had a good life, and that she wouldn’t be opposed to meeting her birth family, although a prospective “reunion” was something that was horribly important to her. I get the impression that if the opportunity ever presented itself, she’d be fine with meeting her birth family. However, she didn’t express an interest in actively seeking them out and seemingly didn’t feel a burning desire to do so.

However, once we moved on from a discussion about “reunion,” she disclosed something that really does bother her – a lack of information regarding her birth family’s medical history. She said that every time she sees a new doctor and they ask her about family medical history, she inevitably winds up shrugging to convey the sentiment that, “Don’t know. Your guess is as good as mine.”

“Liz” also shared that a good friend of hers was recently diagnosed with a major medical condition that requires intense treatment. She indicated that this friend’s recent diagnosis really drove home the point that she’s at a major disadvantage when it comes to not knowing her family’s medical information. What if she has a family history of a disease? What if such knowledge could provide her with the necessary insight to be vigilant about a specific aspect of her health and/or potential symptoms to be on alert for?

My conversation with “Liz” left me with both a deeper awareness of and sympathy for how difficult it must be to have no information about your family’s medical history. It would be incredibly helpful if all adoptees had a mechanism to secure family medical history/information regardless of the circumstances surrounding their adoption. I realize that this many not be possible in some cases, but whenever possible, shouldn’t it be shared, made note of, and then given to adoptive families (and ultimately adoptees)? The desire for this knowledge seems so reasonable and understandable….shouldn’t every adoptee have the right to this information?