Responsibility, culpability, and parental views on genomic testing for seriously ill children

• Published in: Genetics in medicine Vol. 21; no. 12; pp. 2791 - 2797
• Main Authors: Malek, Janet, Pereira, Stacey, Robinson, Jill O., Gutierrez, Amanda M., Slashinski, Melody J., Parsons, D. Williams, Plon, Sharon E., McGuire, Amy L.
• Format: Journal Article
• Language: English
• Published: New York Nature Publishing Group US 01.12.2019; Elsevier Limited
• Subjects: Adult; Biomedical and Life Sciences; Biomedicine; Cancer; Children & youth; Decision Making - ethics; Disclosure - ethics; Female; Genetic Testing - ethics; Genomics; Health Knowledge, Attitudes, Practice; Human Genetics; Humans; Laboratory Medicine; Longitudinal Studies; Male; Neoplasms - genetics; Parenting - psychology; Parents & parenting; Parents - psychology; Sequence Analysis; Social Behavior; Social Responsibility; blame; genomic sequencing; guilt; parent perspectives; responsibility

Purpose We describe parental perceptions of and experiences with genomic sequencing (GS) in the care of seriously ill children. Understanding parents’ perspectives is vital for clinicians caring for children, given the uptake of genomic technologies into clinical practice. Methods Longitudinal, semi...