Literature DB >> 31615869

Supporting Patient Autonomy and Informed Decision-Making in Prenatal Genetic Testing.

Katie Stoll1, Judith Jackson2,3.   

Abstract

Genetic counselors have both the burden and the privilege of supporting patients who are faced with making difficult decisions. In the prenatal setting, genetic counselors are responsible for reviewing a growing list of prenatal testing options for patients with the goal of helping people to anticipate the potential consequences of their decision. Prenatal genetic counselors also support patients in making decisions about the next steps after clinical evaluation has indicated a genetic condition, birth defect, or information of uncertain clinical significance in the fetus. The information provided and choices patients face in the context of prenatal and reproductive genetics can be life-altering, and decisions often must be made within a short window of time. It is imperative that the needs and preferences of each patient are considered and that individuals are empowered to make active decisions that are consistent with their needs and values. Here we will review the history of the role of the genetic counselor in the prenatal setting and will provide strategies and tools for supporting informed patient decision-making in the face of an increasingly complex reproductive genetic testing landscape.
Copyright © 2020 Cold Spring Harbor Laboratory Press; all rights reserved.

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Year:  2020        PMID: 31615869      PMCID: PMC7263097          DOI: 10.1101/cshperspect.a036509

Source DB:  PubMed          Journal:  Cold Spring Harb Perspect Med        ISSN: 2157-1422            Impact factor:   5.159


  40 in total

1.  Informing on prenatal screening for Down syndrome prior to conception. An empirical and ethical perspective.

Authors:  Marleen Schoonen; Boukje van der Zee; Hajo Wildschut; Inez de Beaufort; Guido de Wert; Harry de Koning; Marie-Louise Essink-Bot; Eric Steegers
Journal:  Am J Med Genet A       Date:  2012-02-02       Impact factor: 2.802

2.  Variation in Women's Understanding of Prenatal Testing.

Authors:  Allison S Bryant; Mary E Norton; Sanae Nakagawa; Judith T Bishop; Sherri Pena; Steven E Gregorich; Miriam Kuppermann
Journal:  Obstet Gynecol       Date:  2015-06       Impact factor: 7.661

3.  Nondirectiveness in genetic counseling: a survey of practitioners.

Authors:  D M Bartels; B S LeRoy; P McCarthy; A L Caplan
Journal:  Am J Med Genet       Date:  1997-10-17

Review 4.  A Review of Decision Aids for Patients Considering More Than One Type of Invasive Treatment.

Authors:  Kathleen A Leinweber; Jesse A Columbo; Ravinder Kang; Spencer W Trooboff; Philip P Goodney
Journal:  J Surg Res       Date:  2018-11-13       Impact factor: 2.192

5.  It's complicated - Factors predicting decisional conflict in prenatal diagnostic testing.

Authors:  Cécile Muller; Linda D Cameron
Journal:  Health Expect       Date:  2015-04-13       Impact factor: 3.377

6.  Prenatal screening for Down syndrome: women's involvement in decision-making and their attitudes to screening.

Authors:  Valerie Seror; Yves Ville
Journal:  Prenat Diagn       Date:  2009-02       Impact factor: 3.050

7.  Risk and uncertainty: shifting decision making for aneuploidy screening to the first trimester of pregnancy.

Authors:  Ruth M Farrell; Natasha Dolgin; Susan A Flocke; Victoria Winbush; Mary Beth Mercer; Christian Simon
Journal:  Genet Med       Date:  2011-05       Impact factor: 8.822

Review 8.  Shared decision making: a model for clinical practice.

Authors:  Glyn Elwyn; Dominick Frosch; Richard Thomson; Natalie Joseph-Williams; Amy Lloyd; Paul Kinnersley; Emma Cording; Dave Tomson; Carole Dodd; Stephen Rollnick; Adrian Edwards; Michael Barry
Journal:  J Gen Intern Med       Date:  2012-05-23       Impact factor: 5.128

Review 9.  The Legal Past, Present and Future of Prenatal Genetic Testing: Professional Liability and Other Legal Challenges Affecting Patient Access to Services.

Authors:  Deborah Pergament; Katie Ilijic
Journal:  J Clin Med       Date:  2014-12-15       Impact factor: 4.241

10.  Facilitating informed choice about non-invasive prenatal testing (NIPT): a systematic review and qualitative meta-synthesis of women's experiences.

Authors:  Alexandra Cernat; Chante De Freitas; Umair Majid; Forum Trivedi; Caroline Higgins; Meredith Vanstone
Journal:  BMC Pregnancy Childbirth       Date:  2019-01-14       Impact factor: 3.007

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  1 in total

Review 1.  Genetic Counseling and the Central Tenets of Practice.

Authors:  Barbara Biesecker
Journal:  Cold Spring Harb Perspect Med       Date:  2020-03-02       Impact factor: 6.915

  1 in total

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