title: Nondirectiveness in prenatal genetics: patients read between the lines.
abstract: For decades questionnaires have been used to measure the cognitive and psychological effects of prenatal genetic testing, but little is known about why some women undergo testing and others decline. Research indicates that many factors influence decision making, including values and beliefs. What is often denied rather than recognized is that the professional and personal values and beliefs held by the health care provider influence the patient's decision. It is assumed that, if genetic services are delivered in a nondirective manner, patients will not be affected by the provider's personal and professional standpoint. The qualitative research data reported here challenge this assumption. Getting to know patients' moral understanding and patterns of ethical reasoning by listening to their personal stories is recommended as a better way for nurses to help patients to make informed and autonomous decisions about prenatal genetic screening or diagnostic tests.
authors.affiliation: Division of Social Science, Ethics and Law, Shriver Center for Mental Retardation Inc., Waltham, MA 02254, USA. ganderson@shriver.org
authors.forename: G
authors.initials: G
authors.lastname: Anderson
mesh_terms: D000328:Adult; D003142:Communication; D018864:Cultural Diversity; D003657:Decision Making; D030881:Disclosure; D004989:Ethics; D004993:Ethics, Nursing; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D030661:Genetic Privacy; D033142:Genetic Services; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008423:Maternal Age; D028681:Moral Obligations; D033262:Narration; D009723:Nurse-Patient Relations; D015404:Nursing Methodology Research; D010290:Parents / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D011247:Pregnancy; D018566:Pregnancy, High-Risk; D037841:Pregnant People; D011296:Prenatal Diagnosis / Q000451:nursing / Q000523:psychology*; D036301:Qualitative Research; D012106:Research; D012945:Social Values; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D035501:Uncertainty