Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing

Barlow-Stewart, Kristine, Taylor, Sandra D., Treloar, Susan A., Stranger, Mark and Otlowski, Margaret (2009) Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. Genetics in Medicine, 11 3: 193-201. doi:10.1097/GIM.0b013e318194ee75


Author Barlow-Stewart, Kristine
Taylor, Sandra D.
Treloar, Susan A.
Stranger, Mark
Otlowski, Margaret
Title Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing
Journal name Genetics in Medicine   Check publisher's open access policy
ISSN 1098-3600
1530-0366
Publication date 2009-03-01
Sub-type Article (original research)
DOI 10.1097/GIM.0b013e318194ee75
Open Access Status
Volume 11
Issue 3
Start page 193
End page 201
Total pages 9
Place of publication New York, NY, United States
Publisher Nature Publishing Group
Language eng
Formatted abstract
Purpose: To undertake a systematic process of verification of consumer accounts of alleged genetic discrimination.
Methods: Verification of incidents reported in life insurance and other contexts that met the criteria of genetic discrimination, and the impact of fear of such treatment, was determined, with consent, through interview, document analysis and where appropriate, direct contact with the third party involved. The process comprised obtaining evidence that the alleged incident was accurately reported and determining whether the decision or action seemed to be justifiable and/or ethical.
Results: Reported incidents of genetic discrimination were verified in life insurance access, underwriting and coercion (9), applications for worker's compensation (1) and early release from prison (1) and in two cases of fear of discrimination impacting on access to genetic testing. Relevant conditions were inherited cancer susceptibility (8), Huntington disease (3), hereditary hemochromatosis (1), and polycystic kidney disease (1). In two cases, the reversal of an adverse underwriting decision to standard rate after intervention with insurers by genetics health professionals was verified. The mismatch between consumer and third party accounts in three life insurance incidents involved miscommunication or lack of information provision by financial advisers.
Conclusion: These first cases of verified genetic discrimination make it essential for policies and guidelines to be developed and implemented to ensure appropriate use of genetic test results in insurance underwriting, to promote education and training in the financial industry, and to provide support for consumers and health professionals undertaking challenges of adverse decisions.
Keyword Genetic discrimination
Life insurance
Law
Inherited cancers
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collection: Centre for Military and Veterans' Health Publications
 
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Citation counts: TR Web of Science Citation Count  Cited 31 times in Thomson Reuters Web of Science Article | Citations
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Created: Thu, 03 Sep 2009, 18:29:39 EST by Mr Andrew Martlew on behalf of Centre for Australian Military & Veterans' Health