Literature DB >> 27996923

A Framework for Unrestricted Prenatal Whole-Genome Sequencing: Respecting and Enhancing the Autonomy of Prospective Parents.

Stephanie C Chen1, David T Wasserman1.   

Abstract

Noninvasive, prenatal whole genome sequencing (NIPW) may be a technological reality in the near future, making available a vast array of genetic information early in pregnancy at no risk to the fetus or mother. Many worry that the timing, safety, and ease of the test will lead to informational overload and reproductive consumerism. The prevailing response among commentators has been to restrict conditions eligible for testing based on medical severity, which imposes disputed value judgments and devalues those living with eligible conditions. To avoid these difficulties, we propose an unrestricted testing policy, under which prospective parents could obtain information on any variant of known significance after a careful informed consent process that uses an interactive decision aid to deliver a mandatory presentation on the purposes, techniques, and limitations of genomic testing, as well as optional resources for reflection and consultation. This process would encourage thoughtful, informed deliberation by prospective parents before deciding whether or how to use NIPW.

Keywords:  children and families; clinical genetics; decision making; disability; informed consent; reproductive technologies

Mesh:

Year:  2017        PMID: 27996923     DOI: 10.1080/15265161.2016.1251632

Source DB:  PubMed          Journal:  Am J Bioeth        ISSN: 1526-5161            Impact factor:   11.229


  8 in total

1.  Consumerism: a threat to health?

Authors:  Carlo V Bellieni
Journal:  J R Soc Med       Date:  2018-03-01       Impact factor: 5.344

2.  Ethical and counseling challenges in prenatal exome sequencing.

Authors:  Sarah Harris; Kelly Gilmore; Emily Hardisty; Anne Drapkin Lyerly; Neeta L Vora
Journal:  Prenat Diagn       Date:  2018-09-11       Impact factor: 3.050

3.  Prenatal Whole Genome Sequencing: An Argument for Professional Self-Regulation.

Authors:  Benjamin E Berkman; Michelle Bayefsky
Journal:  Am J Bioeth       Date:  2017-01       Impact factor: 11.229

4.  Genetic Testing Is Messier in Practice than in Theory: Lessons from Neonatology.

Authors:  Katharine Press Callahan; Chris Feudtner
Journal:  Am J Bioeth       Date:  2022-02       Impact factor: 11.229

5.  The fetus in the age of the genome.

Authors:  Dagmar Schmitz; Wolfram Henn
Journal:  Hum Genet       Date:  2021-08-23       Impact factor: 5.881

Review 6.  Genetic Counseling and Genome Sequencing in Pediatric Rare Disease.

Authors:  Alison M Elliott
Journal:  Cold Spring Harb Perspect Med       Date:  2020-03-02       Impact factor: 6.915

7.  Just choice: a Danielsian analysis of the aims and scope of prenatal screening for fetal abnormalities.

Authors:  Greg Stapleton; Wybo Dondorp; Peter Schröder-Bäck; Guido de Wert
Journal:  Med Health Care Philos       Date:  2019-12

Review 8.  The evolving landscape of expanded carrier screening: challenges and opportunities.

Authors:  Stephanie A Kraft; Devan Duenas; Benjamin S Wilfond; Katrina A B Goddard
Journal:  Genet Med       Date:  2018-09-24       Impact factor: 8.822

  8 in total

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