title: Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results.
abstract: To assess how participants receiving abnormal prenatal genetic testing results seek information and understand the implications of results, 27 US female patients and 12 of their male partners receiving positive prenatal microarray testing results completed semi-structured phone interviews. These interviews documented participant experiences with chromosomal microarray testing, understanding of and emotional response to receiving results, factors affecting decision-making about testing and pregnancy termination, and psychosocial needs throughout the testing process. Interview data were analyzed using a modified grounded theory approach. In the absence of certainty about the implications of results, understanding of results is shaped by biomedical expert knowledge (BEK) and cultural expert knowledge (CEK). When there is a dearth of BEK, as in the case of receiving results of uncertain significance, participants rely on CEK, including religious/spiritual beliefs, "gut instinct," embodied knowledge, and social network informants. CEK is a powerful platform to guide understanding of prenatal genetic testing results. The utility of culturally situated expert knowledge during testing uncertainty emphasizes that decision-making occurs within discourses beyond the biomedical domain. These forms of "knowing" may be integrated into clinical consideration of efficacious patient assessment and counseling.
authors.affiliation: Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.|Department of Anthropology, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: M A
authors.identifier: http://orcid.org/0000-0002-4246-9531
authors.initials: MA
authors.lastname: Rubel
authors.affiliation: School of Social Policy and Practice, University of Pennsylvania, 3701 Locust Walk, Caster Building, Philadelphia, PA, 19104, USA. awer@sp2.upenn.edu.
authors.forename: A
authors.initials: A
authors.lastname: Werner-Lin
authors.affiliation: Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.|Department of Anthropology, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: F K
authors.initials: FK
authors.lastname: Barg
authors.affiliation: Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: B A
authors.initials: BA
authors.lastname: Bernhardt
mesh_terms: D000328:Adult; D003657:Decision Making; D005260:Female; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology*; D014481:United States; D055815:Young Adult
keywords: Decision-making; Expert knowledge; Microarray; Prenatal testing; Uncertainty