title: The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making?
abstract: With the increasing technical sophistication of medicine, clinicians' task of assuring patient informed consent is increasingly elusive. Taking the example of prenatal genetic testing, we examine efforts to communicate the complexities of genetic knowledge and risk calculation to patients. In this qualitative, descriptive study, we interviewed 50 clinicians and 40 patients, and observed 101 genetic counseling sessions. We found the clinicians and patients have different goals, purposes, and values regarding testing, which affect their clinical interactions. The information the clinicians provide patients reflects their clinical interest in identifying and controlling pathophysiology, while patients, in contrast, are most concerned with protecting and nurturing their pregnancy. We argue informed patient decision-making about prenatal testing options requires information that is responsive to patient interests. We recommend developing a shared decision-making approach, to facilitate the full participation of both clinicians and patients in the decision-making process.
authors.affiliation: Department of Anthropology and Julian Samora Research Institute, Michigan State University, 354 Baker Hall, East Lansing, MI 48824, USA. huntli@mse.edu
authors.forename: Linda M
authors.initials: LM
authors.lastname: Hunt
authors.forename: Katherine B
authors.initials: KB
authors.lastname: de Voogd
authors.forename: Heide
authors.initials: H
authors.lastname: Castañeda
mesh_terms: D000328:Adult; D000649:Amniocentesis / Q000523:psychology; D001291:Attitude of Health Personnel; D001294:Attitude to Health / Q000208:ethnology; D003142:Communication; D003657:Decision Making; D005260:Female; D005817:Genetic Counseling / Q000592:standards*; D005820:Genetic Testing / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006630:Hispanic or Latino / Q000193:education / Q000208:ethnology / Q000523:psychology; D006801:Humans; D007258:Informed Consent / Q000523:psychology; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000193:education / Q000523:psychology; D010353:Patient Education as Topic / Q000592:standards*; D010358:Patient Participation / Q000523:psychology; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000009:adverse effects / Q000523:psychology*; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D013781:Texas