Abstract
Six percent of children in the United States spend some time in the foster care system by their 18th birthday. Previous research has reported that children in the foster care system have an increased incidence of medical and developmental concerns, and that children with complex medical needs tend to have poorer long-term outcomes of placement and more transient care. Given that medically complex cases are often appropriate to consider a referral to a genetics clinic, a genetic counselor may be one part of the healthcare system that a child in foster care may encounter. Since much of a pediatric genetic counseling session relies on access to family and developmental history information, often gleaned from the biological parents, this study aimed to determine the impact that the unique aspects of foster care have on a genetic counseling session. Pediatric genetic counselors, who had previously counseled at least one patient in the foster care system, were recruited from the NSGC email listserv to participate in an anonymous online survey. Of the 125 respondents, 40% reported seeing a patient in foster care at least twice a month, most commonly for developmental delay or intellectual disability/autism spectrum disorders evaluations. The majority (70.4%) of respondents stated that the referral reasons for their patients in foster care were similar to the rest of their practice. However, over 75% of respondents reported that there are aspects of their counseling that are different when a patient is in foster care. These differences presented in both in the logistical aspects, such as access to patient history, and the psychosocial features of the genetics evaluation, such as determining who is involved in the decision-making or navigating family dynamics. Over 50% of respondents ranked access to history information as a factor that had a high impact on their sessions. More than 60% of respondents agreed that incomplete history information may make it difficult to determine the most appropriate testing strategy, and over 80% agreed that it can lead to a fair amount of uncertainty about the genetic contribution to a child’s developmental or health concerns. The perspectives of the genetic counselors that participated in this research highlighted the need for increased education on the foster care system for providers, increased awareness of the specific psychosocial issues that may need to be addressed, and revealed the lack of knowledge of any standardized protocols for providers and specific resources for foster families.