Chloe's Law: A Powerful Legislative Movement Challenging a Core Ethical Norm of Genetic Testing

Since the early 1970s, the ethical norm governing counselors involved in testing and screening for genetic conditions related to reproduction has been strict neutrality. Counseling about reproductive genetics was to be patient centered but nondirective. Many advocates for people with Down syndrome b...

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Bibliographic Details
Published in:PLoS biology 2015-08, Vol.13 (8), p.e1002219-e1002219
Main Author: Caplan, Arthur L
Format: Article
Language:English
Subjects:
Abortion, Eugenic - ethics
Amniocentesis
Down syndrome
Down Syndrome - diagnosis
Ethics
Female
Funding
Genetic counseling
Genetic Counseling - ethics
Genetic Counseling - legislation & jurisprudence
Genetic research
Genetic screening
Genetic testing
Genetic Testing - ethics
Genetic Testing - legislation & jurisprudence
Genetics
Humans
Laws, regulations and rules
Legislation
Neutrality
Pennsylvania
Pregnancy
Prenatal Diagnosis - ethics
Pro life movement
Women
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Summary:Since the early 1970s, the ethical norm governing counselors involved in testing and screening for genetic conditions related to reproduction has been strict neutrality. Counseling about reproductive genetics was to be patient centered but nondirective. Many advocates for people with Down syndrome believe that high abortion rates following a diagnosis of this condition show an unfounded bias against those with Down syndrome. These advocates have succeeded in enacting federal and state legislation that requires women who receive a prenatal diagnosis of Down syndrome to receive positive information about the condition, thereby ending the nominal goal of value-neutral counseling and setting the stage for further normative shifts in clinical reproductive genetics as counseling expands because of cell-free testing.
ISSN:1545-7885
1544-9173
1545-7885
DOI:10.1371/journal.pbio.1002219