title: Autism spectrum disorders: a qualitative study of attitudes toward prenatal genetic testing and termination decisions of affected pregnancies.
abstract: In the United States, prenatal genetic testing (PGT) for Autism Spectrum Disorders (ASD) is currently available via clinical genetic services. Such testing may inform parents about their unborn child's risk for ASD, prepare parents for the birth of an affected infant, and allow them to arrange for early interventions. Although PGT for autism has potential benefits, the associated ethical, legal, and social implications (ELSI) should be considered. This first qualitative study employed a hypothetical scenario to explore the attitudes toward PGT and termination decisions of 42 parents of children with ASD. Over half of the participants expressed willingness to undergo PGT for autism. Reasons included better preparation for birth, early and better treatment, termination of affected pregnancy, contribution to research, and curiosity. Of the 31 parents who were either willing or unsure about undergoing the PGT, approximately three-fourths would continue their hypothetical affected pregnancies. Explanations included preparation for birth of the child, bonding or acceptance of existing ASD-affected children, apprehensions about test limitations, and religious concerns. Parents who reported they would terminate the affected pregnancy in this hypothetical situation were primarily Asians. This study contributes to the growing understanding of the ELSI aspects of PGT in clinical practice.
authors.affiliation: Department of Health and Kinesiology, Texas A&M University, College Station, TX, USA.
authors.forename: L S
authors.initials: LS
authors.lastname: Chen
authors.affiliation: Department of Health Education and Promotion, East Carolina University, Greenville, NC, USA.
authors.forename: L
authors.initials: L
authors.lastname: Xu
authors.affiliation: Department of Health Education and Promotion, East Carolina University, Greenville, NC, USA.
authors.forename: S U
authors.initials: SU
authors.lastname: Dhar
authors.affiliation: Department of Health and Kinesiology, Texas A&M University, College Station, TX, USA.
authors.forename: M
authors.initials: M
authors.lastname: Li
authors.affiliation: Department of Health and Kinesiology, Texas A&M University, College Station, TX, USA.
authors.forename: D
authors.initials: D
authors.lastname: Talwar
authors.affiliation: Department of Health and Kinesiology, Texas A&M University, College Station, TX, USA.|Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, TX, USA.
authors.forename: E
authors.initials: E
authors.lastname: Jung
mesh_terms: D000028:Abortion, Induced / Q000523:psychology*; D000067877:Autism Spectrum Disorder / Q000175:diagnosis* / Q000235:genetics / Q000523:psychology*; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*; D011639:Public Opinion; D012068:Religion and Medicine; D011795:Surveys and Questionnaires; D014481:United States
keywords: autism; parents; prenatal genetic testing; reproductive decisions; termination of pregnancy