For many individuals, documenting their family’s health history is a standard part of a medical visit. However, for those who are adopted, like Ramya Gruneisen, this task can be daunting or even impossible. “We lack any information about my biological parents, so there is literally nothing to base this on,” explained Gruneisen, who was born in India and later adopted by a family in St. Louis. Frequently, she finds herself marking through sections of health history forms without even needing to read them. “There’s no possibility of contacting birth parents for medical records,” said Gruneisen, who is a public health professional and actively discusses the topics surrounding adoption.
The absence of familial medical data is a widespread challenge among individuals who have been adopted, filled with complex legal and personal implications. Experts, including Gruneisen herself, believe that adoptees, their families, and healthcare providers can take measures to improve the situation, beginning with acknowledging that the issue exists. “Once a child is adopted, there’s a misunderstanding that their previous life has been erased, which is far from true,” remarked Dr. Elaine E. Schulte, the vice chair of academic affairs and faculty development at Montefiore Children’s Hospital in New York City.
Leading health organizations such as the American Heart Association stress the value of knowing one’s family medical history. The Centers for Disease Control and Prevention recommends gathering family medical records and death certificates from relatives. There is even a designated holiday, Thanksgiving, recognized as National Family Health History Day, where families are encouraged to discuss health matters. However, adoptees often lack the means to engage in such discussions.
Dr. Schulte, who is also a professor of pediatrics and the medical director of an adoption program, pointed out that while there are others who may not have complete family histories, the situation for adoptees is distinct. “Adopted individuals come from biological families that they may never know,” she said. Accurate statistics on the number of adoptees in the U.S. are hard to come by. A July estimate by the Washington Post suggested that 1% to 3% of children under 18 are adopted, while a 2020 report estimated around 2.1 million adopted children, excluding adults.
The access to family medical information varies based on each adoptee’s unique situation, according to Dr. Julian K. Davies, co-director of the Center for Adoption Medicine at the University of Washington. Many international adoptions involve children with little to no details about their biological heritage. “Most domestic adoptions today are more open, which allows communication between birth and adoptive families. However, during the mid-20th century and until the 1980s, adoptions were typically closed,” explained Davies.
Adoptive parents have a critical role in gathering medical information. They can initiate this process early by asking questions during international adoptions. “It might be the only opportunity you have to secure valuable information,” Schulte advised. Davies’ program provides guidance to adoptive parents on what inquiries to make, although many adoption agencies already collect limited data on biological family history.
Establishing communication early in open adoptions is crucial, as dynamics may shift over time. Furthermore, adoptive parents can also reach out to biological grandparents or other relatives when feasible. As children grow, honest and appropriate discussions about known and unknown information become essential. Schulte, who has two daughters adopted from China, stresses being a good listener and recognizing children’s expressed emotions regarding their origins.
Gruneisen highlighted the importance of preparing children to take charge of their health as they enter adulthood. Additionally, she emphasized that adoptive parents should prioritize helping their children connect with biological relatives to secure medical histories, even if it makes them uncomfortable. The significance of this endeavor cannot be overstated.
Some adult adoptees may attempt to uncover details about their past by reviewing their own records or contacting the agencies involved in their adoption. A few states have registries that facilitate connections between birth parents and adoptees. However, such reunions are rare. Many adoptees turn to genetic testing to seek answers regarding their heritage. Gruneisen recounted her experience with a consumer genetic test that has changed its findings over the years.
While Davies acknowledges the curiosity surrounding genetic testing, he warns about potential accuracy and privacy issues associated with direct-to-consumer tests. He mentions that nonprofit groups have successfully aided some adoptees in connecting with their birth families through these tests, but clarity and caution are paramount when dealing with genetic testing for specific medical conditions. For young children, it is often advised to wait before pursuing genetic testing unless there’s a pressing medical concern.
Healthcare providers must cultivate an understanding and sensitivity towards adoptees, asserts Dr. Julia Small, a pediatric resident who co-authored a report about adoption issues in healthcare. Small, who was adopted from China, conducted a survey of adult adoptees to gather insights into their healthcare experiences. Although her survey was limited, it indicated that many participants found it challenging not to have family medical history and felt differently treated in healthcare environments.
Sometimes it’s more than just the paperwork that causes issues. Gruneisen recalled a doctor who suggested that she might want to locate her “real family,” implying a hierarchy based on biological connections. Fortunately, her current physician is empathetic to the complexities of adoption and responsive to her inquiries. Moreover, medical professionals are encouraged to approach family history discussions with the recognition that families can be formed in diverse ways.
Moreover, it is vital to create medical forms that allow individuals to express the absence of family medical history without feeling stigmatized. “Leaving sections blank can alienate those of us from non-traditional family structures,” Gruneisen noted. Davies echoed this sentiment, underscoring the need for healthcare professionals to acknowledge the feelings of frustration and grief often experienced by those lacking familial medical histories.
While the significance of family history remains crucial, experts like Schulte argue that the most important advice remains the same regardless of genetic predispositions. Those concerned about potential hereditary health issues, such as heart disease, should focus on maintaining healthy habits—proper nutrition, regular exercise, and sufficient rest. Small recognizes the anxiety some adoptees may feel regarding their health but, thanks to her training, she has become more at peace with the gaps in her medical ancestry. Nonetheless, she stresses that healthcare providers should understand that these gaps can deeply affect individual identities and narratives, which is essential to recognize for both treatment and support.