DNA, Pandora’s Box, and Answers?

As expected, the performance of Sun Mee Chomet’s play “How To Be A Korean Woman,” was powerful, funny, moving, and complex. I was in the audience at the Guthrie Theater in Minneapolis last Sunday afternoon September 22. I then participated in a “talk back” panel along with Sun Mee and with Michelle Johnson, a transracial adoptee (you may have seen her in the highly regarded Struggle for Identity); she’s now the CASA/Guardian ad litem Volunteer Coordinator for the 4th District Court in Minnesota. The topic of our panel was “Moving Forward: Grappling With Unknowns and Never-Will-Be-Knowns.” We talked about our perspectives on adoption issues such as search, reunion, identity, and the struggles to know, to understand, what it means to be adopted and to find answers. And then–what to do with the answers, which inevitably bring about more questions.

(L-R) Maureen Evans, Michelle Johnson, Sun-Mee Chomet

(L-R) Maureen Evans, Michelle Johnson, Sun-Mee Chomet

It was such a privilege to see Sun Mee’s play again, which is now moving toward a well-deserved global tour in Europe and elsewhere. I was also honored to be on the panel with Michelle, whose mom, grandma, and sister also attended the play. Family is amazing.

One of the questions about from the audience was about “unknowns” in an adopted child’s past, and how sometimes there seems to be no hope of finding information.  I commented about the new DNA technologies, which (like so many issues in adoption) answer some questions and create new ones.

DNA Test kits from 23andme.com

DNA Test kits from 23andme.com

A while back, I asked my own children if they were interested in DNA testing. Of my 4 adopted children, now ranging in age from 24 to 26, one was very eager. One said “No, thanks.” One said “Yeah, that sounds interesting, ok.”  One said, “I don’t know.  I’m on the fence.” To that one, I said, “Well, I’ll get the test, and you have 2 years to send it in. Take your time deciding, but this way you have the option.”

The photo above is our family’s newly arrived kits.

The way my sons and daughters responded to the idea of the DNA testing sums up the nature of adoption: each individual responds to it somewhere along a spectrum. Some adoptees are deeply, achingly curious about their roots and origins. Some are sort of interested, and maybe will be more so when they marry or have children. Some have no interest, and that may be due to fear or contentment or something in between.

Each of my now young-adult children has some degree of information about their first families. One has reunited. But none has a detailed medical history.

That’s one of the adoption puzzle pieces that the DNA tests can partially solve.

We decided to use 23andMe for the testing.The first kit is $99, with discounts on additional kits. It’s an easy process: when your kit arrives, you register it online, you fill your funnel with saliva, you send it back in the pre-addressed box it arrived in, and then you get results emailed in about 4-6 weeks.

The funnel tube for saliva sample

The funnel tube for saliva sample

I’ve paraphrased and rearranged information from 23andMe below. Be sure to check out their detailed information on the 23andMe webpage.

Health Risks:  You will find information about how your genetics influences risk for complex diseases like type 2 diabetes and colorectal cancer. We provide an estimate of your risk, using the 23andMe Odds Calculator. These estimates do NOT take into account personal or family history or your lifestyle or environment. There may also be additional genetic factors, yet unidentified or unavailable to our technology, that also contribute to risk for these conditions.

Inherited Conditions: You will learn whether you have genetic variants linked to rare genetic diseases. While most common diseases are complex and result from genetics as well as environment, some conditions — like cystic fibrosis or sickle-cell anemia — are directly caused by genetic variations, also known as mutations.  You might be also be a “carrier” for that condition or mutation. It is still possible to be a carrier for a condition even if your results indicate that you do not have any of the reported mutations.

Drug Response:  You will find information about how your genetics may influence your sensitivity to certain drugs, risk of side effects or general effectiveness. Always work with your health care provider to determine whether a drug or medication is right for you.

This is all, admittedly, very serious and daunting stuff.

I wrote about the complexities of DNA and adoption here and about DNA and outrage here. Is getting this information little more than opening a Pandora’s box of disease possibilities? If my child finds out he or she has a great risk of cancer, is that helpful?

I don’t know.  I am going to make sure I go over with each of them what the information will provide, and leave it to them as to whether they want to be tested, want to read the results, and want to do anything with the results. At a minimum, they have control over this decision, unlike many in their adoption journey.

I’ve known adoptees who have struggled with difficult medical conditions, who endure pain and misdiagnoses and wrong medications and debilitating side effects. If they’d had their medical history (including health risks, inherited conditions, and drug responses), maybe much of the pain could have been avoided, the treatments done in a timely manner, and less time and money wasted.

Knowing you’re a carrier of certain genetic diseases seems important; at least it seems you should have the option to know. The medical information creates ethical questions, I realize: questions that can affect future generations. Information can be power. I like the idea of being able to work more closely with my health care provider to manage my health in as proactive a way as possible. It’s big stuff.

At the bottom of Pandora’s box was Hope. That seems important too.

In a follow-up post, I’ll be writing about 23andMe’s information about ethnicity and ancestry–much less ethically complex, perhaps, but still challenging.

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