Effects of participation in a U.S. trial of newborn genomic sequencing on parents at risk for depression

• Published in: Journal of genetic counseling 2022-02, Vol.31 (1), p.218-229
• Main Authors: Schwartz, Talia S., Christensen, Kurt D., Uveges, Melissa K., Waisbren, Susan E., McGuire, Amy L., Pereira, Stacey, Robinson, Jill O., Beggs, Alan H., Green, Robert C., Bachmann, Gloria A., Rabson, Arnold B., Holm, Ingrid A.
• Format: Article
• Language: English
• Subjects: Averages; Child; Children; Childrens health; Concerns; Depression; Depression, Postpartum - diagnosis; Depression, Postpartum - prevention & control; Depression, Postpartum - psychology; Depressive Disorder, Major; Depressive personality disorders; exome sequencing; Fathers; Female; Genomics; Health problems; Humans; Infant, Newborn; Medical screening; Mental depression; Mental health; Mothers; Mothers - psychology; newborn screening; Occupational stress; Parental stress; parents; Parents & parenting; Parents - psychology; Participation; pediatrics; Postpartum depression; Postpartum period; Psychological assessment; Psychological safety; Psychological well being; psychosocial; Thresholds
• ISSN: 1059-7700; 1573-3599
• DOI: 10.1002/jgc4.1475

Much emphasis has been placed on participant's psychological safety within genomic research studies; however, few studies have addressed parental psychological health effects associated with their child's participation in genomic studies, particularly when parents meet the threshold for clinical concern for depression. We aimed to determine if parents’ depressive symptoms were associated with their child's participation in a randomized‐controlled trial of newborn exome sequencing. Parents completed the Edinburgh Postnatal Depression Scale (EPDS) at baseline, immediately post‐disclosure, and 3 months post‐disclosure. Mothers and fathers scoring at or above thresholds for clinical concern on the EPDS, 12 and 10, respectively, indicating possible Major Depressive Disorder with Peripartum Onset, were contacted by study staff for mental health screening. Parental concerns identified in follow‐up conversations were coded for themes. Forty‐five parents had EPDS scores above the clinical threshold at baseline, which decreased by an average of 2.9 points immediately post‐disclosure and another 1.1 points 3 months post‐disclosure (both p ≤ .014). For 28 parents, EPDS scores were below the threshold for clinical concern at baseline, increased by an average of 4.7 points into the elevated range immediately post‐disclosure, and decreased by 3.8 points at 3 months post‐disclosure (both p