The Genetic Information Nondiscrimination Act: Fear Factor or Fantasy Island?

Yet concern about discrimination is cited as an important reason that people forgo either clinical genetic testing or participation in genetic research.2 The hope is that GINA will be a necessary step on the way to individualized medicine based on genetics - even if it is not a sufficient one - beca...

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Bibliographic Details
Published in:The Hastings Center report 2008-11, Vol.38 (6), p.11-12
Main Author: Wilfond, Benjamin S.
Format: Article
Language:English
Subjects:
Behavior
Bioethics
Confidentiality
Cystic fibrosis
Decision making
Employment discrimination
Evidence-Based Medicine
Genetic discrimination
Genetic Information Nondiscrimination Act 2008-US
Genetic Privacy - legislation & jurisprudence
Genetic testing
Government regulation
Health care
Humans
Laws, regulations and rules
Medical research
Metaphor
Prejudice
Studies
United States
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Summary:Yet concern about discrimination is cited as an important reason that people forgo either clinical genetic testing or participation in genetic research.2 The hope is that GINA will be a necessary step on the way to individualized medicine based on genetics - even if it is not a sufficient one - because it addresses this perceived barrier of genetic discrimination.3 However, the very idea of GINA has been criticized because it reinforces a "genetic exceptionalism" - the concept that genetic information is somehow different from other kinds of medical information - rather rhan addressing the underlying problem, which is that health care coverage is limited for those who are ill. While current state laws and HIPAA offer related protections, there are complexities and nuances related to all of these laws that may limit the extent of the protection they provide.7 Ensuring that patients and research subjects do not think that GINA's passage equals simply changing the channel from Fear Factor to Fantasy Island will be a challenge.
ISSN:0093-0334
1552-146X
1552-146X
DOI:10.1353/hcr.0.0077