The 1997 NIH Consensus Statement on Cystic Fibrosis (CF) testing recommended CF carrier testing for high-risk individuals, pregnant women, and couples planning pregnancy. Informed consent in CF carrier testing is predicated upon individuals making rational decisions based on genetic testing information received in the clinical encounter. The decision making process also involves the interaction of patient and contextual factors within the unique features of decision-making. Little is known about how these factors influence the use of genetic knowledge in the decision making process. The purpose of this study is to describe patient and context variables contributing to decision making in Cystic Fibrosis Carrier Testing (CFCT) in pregnant females in the primary care setting. This descriptive qualitative study will use semi-structured interviews to identify how patients use genetic information of CFCT within the patient's own personal and contextual factors to make CFCT testing decisions in primary care practices in Iowa and Illinois. The study sample will consist of pregnant women receiving prenatal care in a community based clinic or private practice, who are offered CF carrier testing during their pregnancy. Demographic questions will describe the sample, which will be analyzed through descriptive statistics. Qualitative computer software will be used to categorize interview data, which will then be analyzed through content analysis of audiotaped and transcribed interview transcripts and field notes. Understanding patient and contextual factors influencing patient genetic decision-making is important for promoting rational and autonomous patient health care decisions. Understanding patient health care decision-making is key information in building knowledge of patient/health care system interplay and developing patient sensitive health care systems.
| Sparbel, Kathleen J H; Williams, Janet K (2009) Pregnancy as foreground in cystic fibrosis carrier testing decisions in primary care. Genet Test Mol Biomarkers 13:133-42 |
