A Genome of One

In 2004, I went to Korea for the first time since I had been adopted as an infant. It was a beautiful, heart-wrenching experience to be back in my birth country, surrounded by people who looked like me, and yet not being able to say more than basic travel phrases. One of the most vivid memories I have from that trip was visiting the bathhouse. Women of all ages stood around naked, brushing their hair, washing their bodies, chatting with each other. I was amazed at the easy familiarity the women showed and felt very much an outsider. Then it struck me: I had never in my life seen another adult Korean woman’s body, and never an elder. I had no idea what Korean bodies looked like or how I might look at 70. I was hit with a loss so deep that it still feels present today: I only know myself. There is no one else.

I think it’s fair to say that international adoptees know loss. We have lost our native language, our culture, and our first families. There is nothing that can replace this. Sometimes the losses shift places and trade importance in our lives, but as we grow older, the loss that affects our day-to-day existence is the absence of family history.

In my late 20s, I developed a thyroid condition that my doctor speculated might be genetic. During this time, it merely annoyed me to have to out myself as adopted at every medical appointment. But when I had children in my 30s, the lack of information actually terrified me; what might be lurking in my DNA that could prevent me from raising my sons to adulthood? What might I be passing to them that could adversely affect their health?

Recently, I took my oldest son to his pediatrician due to mild chest pain. The nurse practitioner evaluated him and said he seemed perfectly well. She then mentioned that there are familial heart conditions that have a childhood onset and did I have any family history of heart conditions? I felt an overwhelming rush of frustration because I could not provide possibly crucial information for my son’s care. Once again, like a hundred times before, I had to shake my head and tell yet another provider that I was adopted, and that I had no information. At least I could offer information about my husband’s side of the family. But what if I did have information and what if my biological family did have a history of heart conditions? These basic facts about my family medical history could have changed my son’s care.

I have to pause here. Knowledge of my family history could have changed my son’s care. I don’t write this lightly. As a genetic counseling graduate student, I have done a lot of research on how risk assessments are employed in medical care—in countless journal articles, family history is cited as the gold standard for situating personal disease in a risk stratification. One of the most important tasks of the genetic counseling profession is risk assessment: identifying patterns in family history, helping patients make informed choices about genetic testing based on their personal and family history, and then assisting with the interpretation of test results. In some cases, results impact medical management, not only for the patient, but for the family members of the patient. Family history truly does matter.

Those without family history, like many adoptees, are relegated to “average risk” by many guidelines issued by national care networks. We adoptees may contain any number of causative, disease-associated mutations and if we are not yet sick, guidelines recommend population-level, average risk screening evaluations. I find this to be an injustice. It enrages me to think that I would have to develop breast cancer before I can get insurance coverage for genetic testing even though research has shown that preventive care is less expensive compared to treating advanced-stage illnesses. It is outrageous that my son would have to have serious heart problems before we could get genetic testing covered...