Written by Madison Dietl
Every so often when I visit a new doctor or specialist, they’ll ask me about my family medical history. Being adopted as an infant, all I can do is shrug and say “I don’t know.” Usually, the doctor will just move on without a second thought, unconcerned. I can’t say the same for myself. A nagging feeling remains in the back of my mind. What if I shouldn’t be going on this new medication due to an unknown increased genetic risk of developing cancer? How can I be treated effectively without having all of the information?
This story is familiar to many adopted people. I was placed into the care of my adoptive parents the day I was born, and have had no contact whatsoever with my biological parents since. This is referred to as a “closed” adoption, where there is no further contact between the two parties after birth. While many adopted individuals may still have contact with their birth parents, around 30% of adoptions are closed, accounting for 91 thousand placements a year, or 2 million Americans in all. This being said, the topic of adoption is clearly one of significance as 100 million Americans have adoption in their immediate family, whether it be being adopted, adopting, or working to place children. There are many strong opinions and emotionally charged debates around the subject, but one aspect of adoption getting a lot of attention lately is the availability of family medical history to people who had a closed adoption.
Parents who place children for adoption do so for any number of reasons: financial, societal, and cultural, to name a few. These constraints often mean they are not able to raise a child themselves. Lifetime Adoption acknowledges that the decision to place can be nearly impossible, and most birth parents do so out of sheer love for their child and a selfless desire to “provide a better life for the future.” This sacrifice is an immense one, and some birth parents may choose to have no contact stemming from a need to move on from that painful part of their life. Birth parents should be entitled to their privacy. Non-identifying information, as it is referred to, such as general descriptions and first names, are often obtainable, though any information beyond that can be hard to get. Identifying information, such as last names, appearance, current address, or other family members, is generally not available to adopted children unless the birth parent allows it. However, only 30 states have a mutual consent registry, where parents and children can share information without having to track each other down. Currently, 19 states require a court order to obtain an adoptee’s original birth certificate, and in 40 states the court will not release it without the consent of the birth parents. Specifically in Massachusetts, adopted individuals born between 1974 and 2008 have no legal right whatsoever to their original birth certificate, including my sister and I. Medical information is an entirely different story. So if I wanted to know my family medical history, and had no legal recourse to do so, what are my options?
Genetic testing is a booming market, and it is often seen as the catch-all for anyone’s questions about their medical information. For some people, having their DNA sequenced can be life changing. Amanda Gonzalez-Bunster’s life was saved after years of chronic illness, when a DNA test showed she was one of 31 people in the entire world that has familial partial lipodystrophy type 3, which means her body could not produce fat tissue. Nick Volker was famously the first child saved by DNA testing after it identified a mutation causing a colon disease that could be fixed with a bone marrow transplant. Their diseases are treatable now that they are identified, and for a person with no medical history, their DNA could indicate if they are at higher risk for certain diseases. While these results are beyond helpful, genetic testing is not perfect. Clinical Chief Robert H. Smelling of Harvard University says in his article that results of genetic testing may “provide information you already know, or may even be misleading.” Learning you have a mutation that rarely causes health problems may only serve to alarm you. However, as Smelling mentions, some information like being at an increased risk for Altzheimers may be “more upsetting than useful” as there is no cure. Genetic testing also may not be equally informative for everyone. An NCBI study found that a typical screening for Familial Hypercholesterolemia missed important genetic variants in 94% of Black and 85% of Hispanic individuals. There are also concerns about privacy. Few regulations surround what direct to consumer (DTC) genetic testing companies like 23andme and Ancestry.com can do with your data, and Consumer Reports found that 78% of companies sell customer’s data to third parties without their consent.
For some people, the above reasons make genetic testing an undesirable option. The only other way to obtain family medical history is to have it come from family members, or in the case of closed adoption, from a court of law. Adoption legislation is constantly changing, and activists everywhere are striving to strike a balance between the privacy of birth parents and the rights of the adoptee to their information. The map shows the states where legislation is currently pending. In Massachusetts, Bill HD1543, if passed, promises to “grant equal access to original birth certificates to all persons born in Massachusetts,” closing a 30 year “donut hole” in the law denying that right to certain adoptees. At the federal level, the Adoptee Citizen Act is soon coming before Congress. The Act closes a discriminatory loophole in US immigration law, one that denies citizenship to thousands of international adoptees who decades ago were legally adopted by U.S. citizen parents, giving them the citizenship they are entitled to. These pieces of legislation are paving the way to equal rights for all persons, regardless of their blood relation to the people who raised them.
Laws about adoptee rights are being passed every day in the United States. However, concerns about privacy rights, as well as complicated bureaucratic legal avenues to information hold adoptees back from the knowledge that is their birthright. Everyone has the intrinsic human desire to know who they are and where they come from. Laws standing in the way of that are falling, albeit slowly. One day I hope to not have to worry when being prescribed a new medicine, to know if I’m at risk of passing a genetic disease to future children, and to simply hold my own birth certificate. Thanks to the work of adoption advocates and new knowledge about the health benefits of having this information, that day will come.
Edited by Sophie Johnson