Does the amount of family history matter? Perspectives of adult adoptees

Abstract

Family history is considered the gold standard for risk assessment of inherited conditions and is often used to inform preventative care. There are currently no provider guidelines that address caring for patients with a lack of family history, and adoptees report inconsistent care because of this. Through this qualitative study, we explored (1) how the amount of family history impacts adoptees' perceptions of healthcare and (2) adoptees' suggestions for improvement of their healthcare. Fourteen adult adoptees participated in semi-structured interviews via telephone or Zoom audio. Transcripts were analyzed using thematic analysis and interpretive phenomenology. Results revealed five themes: adoptees should have access to their family health history; several factors influence the importance of family history (reproduction, identity formation, age, and health concerns); many adoptees use direct-to-consumer testing to gain information about health risks or to find family members; completing history forms or being asked about family health history invokes negative emotions in adoptees; experiences with healthcare providers are variable for adoptees. These results show that unknown family health history can contribute to a negative perception of healthcare. Adoptees perceive family health history as important to know, and not having this information brings up complex emotions in the healthcare setting. To help mitigate the disparities and the negative emotions that adoptees feel, genetic counselors should consider acknowledging the complex emotions, reassuring adoptees with available preventative care, and revising preclinical paperwork, such as family health history questionnaires, to be more inclusive of those who lack this information. These changes have the potential to significantly improve healthcare experiences for adoptees. Healthcare providers, especially genetic counselors, need to continue to learn about and advocate for this population.