title: Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors.
abstract: Advances in genetic testing and the availability of such testing in pregnancy allows prospective parents to test their future child for adult-onset conditions. This ability raises several complex ethical issues. Prospective parents have reproductive rights to obtain information about their fetus. This information may or may not alter pregnancy management. These rights can be in conflict with the rights of the future individual, who will be denied the right to elect or decline testing. This paper highlights the complexity of these issues, details discussions that went into the National Society of Genetic Counselors (NSGC) Public Policy Task Force's development of the Prenatal testing for Adult-Onset Conditions position statement adopted in November 2014, and cites relevant literature on this topic through December 2015. Issues addressed include parental rights and autonomy, rights of the future child, the right not to know, possible adverse effects on childhood and the need for genetic counseling. This paper will serve as a reference to genetic counselors and healthcare professionals when faced with this situation in clinical practice.
authors.affiliation: Joan H. Marks Graduate Program in Human Genetics, Sarah Lawrence College, NY, USA.
authors.forename: Laura
authors.initials: L
authors.lastname: Hercher
authors.affiliation: Department of Internal Medicine and Department of Human Genetics, University of Michigan, Ann Arbor, MI, 48109, USA.
authors.forename: Wendy R
authors.initials: WR
authors.lastname: Uhlmann
authors.affiliation: Department of Oncology, Littleton Adventist Hospital, Littleton, CO, USA.
authors.forename: Erin P
authors.initials: EP
authors.lastname: Hoffman
authors.affiliation: Informed DNA, Saint Petersburg, FL, USA.
authors.forename: Shanna
authors.initials: S
authors.lastname: Gustafson
authors.affiliation: Personalis Inc, 1330 O'Brien Drive, Menlo Park, CA, 94025, USA. km_chen@yahoo.com.
authors.forename: Kelly M
authors.initials: KM
authors.lastname: Chen
mesh_terms: D000328:Adult; D005260:Female; D005333:Fetus; D005817:Genetic Counseling / Q000941:ethics* / Q000331:legislation & jurisprudence; D005820:Genetic Testing / Q000941:ethics* / Q000331:legislation & jurisprudence; D006801:Humans; D010290:Parents; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000941:ethics*; D012955:Societies, Medical; D014481:United States
keywords: Adult-onset conditions; Ethical issues; Genetic counseling; Position statement; Prenatal testing; Reproductive rights; The National Society of genetic counselors