Psychosocial Factors Influencing Parental Interest in Genomic Sequencing of Newborns

Pediatrics. 2016 Jan;137 Suppl 1:S30-5. doi: 10.1542/peds.2015-3731G.

Abstract

Background: When parents of newborns are presented with the hypothetical possibility of obtaining genomic sequencing (GS) for their newborn infants immediately after birth, they express substantial interest. This study examined associations between expressed interest in GS and demographic and psychosocial variables some months after birth.

Methods: A total of 1096 parents were enrolled in a study on GS of newborns shortly after the birth of their infants, before discharge from the postpartum floor. Of these parents, 663 (60.5%) completed a follow-up survey 2 to 28 months later that queried their interest in GS for their infant and whether they received worrisome health information during pregnancy, labor, and delivery. They were also administered the Parenting Stress Index. Multivariate logistic regression was used to examine factors associated with interest in GS of newborns.

Results: Of parents, 76.1% indicated at least some interest in GS. A 10-point increase on the Parenting Stress Index was associated with an increase in the odds of having some interest in GS (odds ratio: 1.15; 95% confidence interval: 1.01-1.32). Age, gender, race, ethnicity, marital status, education, anxiety, and whether this was the first biological child were not significantly associated with interest in GS. Receiving worrisome health information was associated with greater interest in GS but this did not reach significance (odds ratio: 1.42; 95% confidence interval: 0.95-2.12).

Conclusions: This hypothetical survey study suggests that previous experiences leading to worrisome health information and parenting stress need to be considered when GS is offered. Additional research, currently underway, is exploring factors associated with real-life parental choices around whether to obtain GS of their newborns.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adolescent
  • Adult
  • Exome / genetics
  • Female
  • Follow-Up Studies
  • Genetic Predisposition to Disease / psychology*
  • Genetic Testing*
  • Genome, Human / genetics
  • High-Throughput Nucleotide Sequencing*
  • Humans
  • Infant
  • Infant, Newborn
  • Male
  • Massachusetts
  • Middle Aged
  • Multivariate Analysis
  • Neonatal Screening / psychology*
  • Parents / psychology*
  • Pregnancy
  • Pregnancy Complications / psychology
  • Sequence Analysis, DNA
  • Stress, Psychological / etiology
  • Young Adult