For the first 18 years of my life, my family history was a complete mystery. I was adopted as a baby, and while at times that reality has been painful, I was extremely fortunate to have been raised by two of the kindest people who were simply meant to be parents. But despite having an idyllic childhood, I spent a lot of time imagining my birth family. I wondered what they looked like, what their voices sounded like, and if they shared my interests and passions.
What I never really wondered about was whether they had a significant risk for cancer, or whether my grandparents had heart problems. I never wondered if my birth mother experienced migraines or, if like me, she suffered from eczema. Mine was a closed adoption, where the adoption is seen as a final goodbye, and I received minimal information about my birth family and certainly no medical records at all.
Every time I saw a new doctor, attended a routine appointment, or when I was unexpectedly unwell, medical staff would ask me about my family health history. All I could do was shrug my shoulders and say, “I don’t know.”
My family health history was a blank page.
At 18, I did meet my birth family, and over the course of a few visits we fell over our words trying to make up for all those years in a tumble of questions. I wanted to know where I had inherited my features, if my laugh was the same as my birth mother's (it was) and to fill in all those spaces in my personal history.
But it felt rude and macabre to ask how my relatives died or if anyone in the family had cancer. Talking about death and disease is often tricky, but without that ease of maternal familiarity that I shared with my adoptive mother, I felt pushy and insensitive. I was also still a teenager and suffering from the common delusion of reckless invincibility. My good health was a cloak, shielding me from thinking about illness and letting me walk in denial. As I got older and became a mother myself, I suddenly had someone else's health legacy to worry about, and I began to ask my birth mother how everyone in my family tree had met their end.
Recently, one of my birth relatives contacted me to say I needed to see a doctor about a hereditary heart defect, and I am currently undergoing tests to see how I may be affected. But the situation made me think that if I hadn’t reconnected with my biological family, I would never have known about my potential risk.
For some, not knowing your history can make the future seem even more uncertain.
And that can be scary and frustrating when you—or your children—develop health issues.
People who were adopted can ask their adoptive parents if they received any medical information about their biological parents at the time of their adoption or can check with their adoption agency. But if they don’t find the answers they’re looking for that way, it can be complicated to fill in the holes in one’s health history.
Adoptions can be either open—where birth parents and adoptive parents may keep in contact and share information throughout the child’s life and may even include regular visits—or closed or confidential. In almost all states, once a closed adoption is finalized, the records are sealed and it can be tricky to access any health history information relating to a biological parent. However, health records are considered non-identifying information, so adopted people can request for this information to be released, but rules vary by state and some require you to register with a department and apply in writing.
Even if this information is obtained, it likely will not have been updated to reflect the health of the birth parents over the years. For many adopted people, the bureaucracy involved can become a barrier, or they may feel that opening that Pandora’s box of secrets is too emotionally overwhelming to face.
For Nanci, from Utah, this lack of information contributed to a lifetime of misdiagnoses. Before she was born (in St. Petersburg, Florida), it was arranged that she would be adopted at birth. Then she was diagnosed at birth with neurofibromatosis, a genetic condition where tumors form on nerve tissue. In her case, the prognosis was bleak and she wasn't expected to survive, she tells SELF. Her birth records were sealed, and she was made a ward of the state and placed in a medical orphanage.
Against the odds, Nanci survived and spent six years bouncing around foster homes, before it was determined that she didn't have neurofibromatosis at all. Then she was adopted. Doctors searched for a reason for her ill health for years, lamenting the fact that they had no family history to consult. Eventually, when she became pregnant, she received a full medical workup that included genetic testing, and Nanci was correctly diagnosed with Klippel-Trenaunay syndrome (KTS), which is a rare congenital disorder resulting in an overgrowth of bones and soft tissue.
After becoming a mother, Nanci wanted more than ever to have clear access to her family medical history, and, although it took many years, eventually the courts did unseal her records. Nanci went on to meet her birth mother and connected with relatives on her dad's side and received medical information that has been extremely important for her health and that of her daughter.
Becky, from California, was adopted as a baby along with her twin and didn’t have any information about their birth mother's medical history. Her twin was diagnosed with epilepsy and they both developed type 2 diabetes later in life. Becky’s son also became ill with a blood disease, one that could have been hereditary. She wishes that basic health reports were given to all adopted children as part of their official records. “Knowing nothing about my family medical information was scary and frustrating as a mom,” she tells SELF. “When my child got sick it was like a puzzle trying to figure out our health history.”
Tom May, Ph.D., a bioethicist for HudsonAlpha Institute for Biotechnology, has conducted a number of adoptee focus groups (of about 30 people in each) over the past five years discussing how genomic sequencing can help fill in the gaps of their health history. He found that while many adoptees are, as you might expect, motivated to learn about their genetic ancestry for their own health history, their determination to seek answers is often sharpened when they become a parent or begin to plan for a family.
“By far the most common worries relate to adoptees’ own future and present children, and the inherited health conditions they might be passing to them and the need to be vigilant for potential signs and symptoms,” May tells SELF.
The anecdotal findings of his focus groups suggest that adoptees report being misdiagnosed, having their symptoms misinterpreted (as Nanci experienced), and enduring invasive tests that could have been ruled out with complete family medical records. What’s more, the records that adopted people are able to access may consist of little more than a self-reported scrawl of “no medical issues” by biological parents on registration forms. As a result, many medical problems go unreported—especially if they’re stigmatized in any way.
For people who were adopted and want more information about their health history, genetic testing is often a last resort.
Genetic testing provides a person with a complete map of their genetic information and can highlight the risk for potential medical issues. But many people in the medical community argue that this testing is too sensitive and broad and can provide unreliable information related to very rare conditions. This can result in unnecessary testing, which in turn can drive up medical bills, as well as heightened patient anxiety.
However, for people with limited or completely missing family medical data, these services can also be life-changing in helping to explain adopted people's symptoms or alert them to a hidden health risk. (As one example, people of Ashkenazi Jewish descent have a higher risk than the rest of the population of having the BRCA1 and BRCA2 variants, which carry significant risk for certain cancers, including breast cancer.)
If you do decide to go this route, speaking with a genetic counselor is crucial, as it allows you to accurately interpret your results and work through potential emotional responses to any information you may discover.
“Before you test, understand and consider what your test could potentially find," certified genetic counselor Marie Schuetzle, reproductive genetics team leader at InformedDNA (an independent provider of genetic specialists), tells SELF. "Is this information that you are prepared to know? Also, understand the limitations [of testing]."
For example, it’s important to remember that genetic testing alone cannot tell us whether we will definitely develop a condition or disease. “Even with the most comprehensive genetic testing, there is likely to be some remaining uncertainty,” Schuetzle says. “Given the issues that can arise from the complexities of genetic testing, it is best to involve a genetics expert to get the most out of your genetic investigation.”
And, like with any emerging industry, there are some unscrupulous companies who provide little value for money, Schuetzle says—so it’s important to do your research to find quality and reliable genetic resources like those found through The National Society of Genetic Counselors or The National Human Genome Research Institute.
Personally, I have chosen not to undergo genetic testing, as I already have a connection with my biological family and am able to ask them certain questions, even if those conversations are difficult to have.
Another personal reason I’m wary of doing a genetic test: I strongly believe that a little information wrongly interpreted could be dangerous emotionally and physically; I’m not a doctor, and without expert medical understanding, it could be very easy to misinterpret the results and over- or underreact. Not to mention, these tests can be expensive. (Some insurance plans will cover genetic testing if it’s recommended by a physician.)
Becky has also forgone genetic testing for now. As a single mom, the financial barrier was something she considered insurmountable.
We all deserve the right to as much information as possible to make informed decisions about our health and wellness.
For adopted people, their family health history can be an important missing element in their health care plan. The way someone chooses to navigate these unknowns is an incredibly emotional and personal choice, and it’s theirs to make.
The term “birth mother” has been used in this article in accordance with the Positive Adoption Language (PAL) guidelines. This is my preferred adoption language, as opposed to using phrasing such as “real mother.” More information can be found here.