Adoptee Thoughts on DNA Testing

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I participated in a roundtable discussion called a ‘Community Studio’ about adoptees and DNA Testing. It was facilitated by two adopted geneticists at the National Institutes of Health.

There were about 15 participants, most internationally adoptees. I was the only Indian-adoptee, but it included adoptees from Korea, China, and the Philippines. The non-adopted participants included an Ethiopian social worker and another participant’s spouse.

For two hours, we engaged in a lively discussion about DNA testing, using popular DNA kits. And we deliberated about our legal, ethical and moral concerns with the process.

The first question we discussed was ‘have you participated in genetic ancestry testing and why?’ The answers were interesting. A quarter of the room had completed DNA tests, half were interested in them and the remainder were unsure or flatly refused.

One of the overarching questions we explored was, ‘why is finding biological family so important to adoptees?’

Some said finding biological family was crucial because they wanted potential medical history, especially women, regarding pregnancy issues. Others said they wanted to complete their narrative.

We recognized that as international adoptees, we will always have much uncertainty around our roots. But for most of us, finding a blood relation was potentially meaningful. While the group agreed that finding direct relatives was important, finding a 3rd or 4th cousin was not as crucial.

While adoptees may have a greater interest in finding any biological relative, in reality, that enthusiasm waned the farther away the relation was from a direct biological connection.

Why do adoptees place importance on connection with blood relatives even if they were never part of our lives?

Adoptees can choose two avenues when it comes to biological searches. One is taking a DNA Test like Ancestry or 23andMe and the other is actively searching for their biological roots.

One aspect of the DNA tests that we discussed was their simplicity. The test’s popularity are driven by scientific advances. But many viewed their attractiveness as trendy and rightly or wrongly, a quick step to answer questions. But I cautioned restraint.

We discussed available resources for those taking DNA tests. I remarked that I think some people use DNA tests believing they will learn ‘all’ the answers. In reality, after talking with various friends, DNA tests caused more queries.

For me, this is a fundamental fallacy about DNA tests, especially for adoptees. Everyone agreed that adoptees in particular, are enamored with the idea of family history resolution.

The products’ marketing messages play into those feelings. While DNA testing opens avenues previously closed, it also reveals further unanswered questions.

We also discussed privacy and DNA testing legalities.  Some expressed fear that large DNA databases could be manipulated. We wondered if participants can reasonably assume their data will remain private.

One may sign a form saying their DNA is your own, but what happens if the company gets subpoenaed and is forced to reveal its data.

Can one assert that their DNA should be exempt because they have a clear criminal record? Who actually owns the rights to one’s DNA? And what can they do with it, with or without your consent?

The world of DNA databanks is rife with security issues. Are companies educating their users about them?

Another aspect of DNA testing is that it requires trust in institutions and authorities. I think many adoptees have trouble with that, as institutional breakdowns lie behind many adoptions.

One guy said he took a DNA test at his mother’s urging, but was uneasy about sending his information to a company and losing control of it aftewards.

His comments were timely as news stories abound about the safety of DNA databases.

For me, having control over my DNA is the difference between searching using a test and investigating using personal contacts and research. That oversight is what many adoptees feel they have lost through adoption.

Therefore, I find it curious that many would voluntarily relinquish that control for a DNA test’s answers.

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