Literature DB >> 25242499

Public awareness of genetic nondiscrimination laws in four states and perceived importance of life insurance protections.

Alicia A Parkman1, Joan Foland, Beth Anderson, Debra Duquette, Holly Sobotka, Mary Lynn, Shelley Nottingham, William David Dotson, Katherine Kolor, Summer L Cox.   

Abstract

Genetic testing has grown dramatically in the past decade and is becoming an integral part of health care. Genetic nondiscrimination laws have been passed in many states, and the Genetic Information Nondiscrimination Act (GINA) was passed at the federal level in 2008. These laws generally protect individuals from discrimination by health insurers or employers based on genetic information, including test results. In 2010, Connecticut, Michigan, Ohio, and Oregon added four questions to their Behavioral Risk Factor Surveillance System (BRFSS) survey to assess interest in genetic testing, awareness of genetic nondiscrimination laws, concern about genetic discrimination in determining life insurance eligibility and cost, and perceived importance of genetic nondiscrimination laws that address life insurance. Survey results showed that awareness of genetic nondiscrimination laws was low (less than 20 % of the adult population), while perceived importance of these types of laws was high (over 80 % of respondents rated them as very or somewhat important). Over two-thirds of respondents indicated they were very or somewhat concerned about life insurance companies using genetic test results to determine life insurance coverage and costs. Results indicate a need for more public education to raise awareness of protections provided through current genetic nondiscrimination laws. The high rate of concern about life insurance discrimination indicates an additional need for continued dialogue regarding the extent of legal protections in genetic nondiscrimination laws.

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Year:  2014        PMID: 25242499      PMCID: PMC4702480          DOI: 10.1007/s10897-014-9771-y

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  21 in total

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2.  What's at stake? Genetic information from the perspective of people with epilepsy and their family members.

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3.  Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center.

Authors:  K Ready; B K Arun; K M Schmeler; A Uyei; J K Litton; K H Lu; C C Sun; S K Peterson
Journal:  Fam Cancer       Date:  2011-12       Impact factor: 2.375

4.  Genomic risk profiling: attitudes and use in personal and clinical care of primary care physicians who offer risk profiling.

Authors:  Susanne B Haga; Madeline M Carrig; Julianne M O'Daniel; Lori A Orlando; Ley A Killeya-Jones; Geoffrey S Ginsburg; Alex Cho
Journal:  J Gen Intern Med       Date:  2011-02-11       Impact factor: 5.128

5.  Changes in specialists' perspectives on cancer genetic testing, prophylactic surgery and insurance discrimination: then and now.

Authors:  Ellen T Matloff; Danielle C Bonadies; Anne Moyer; Karina L Brierley
Journal:  J Genet Couns       Date:  2013-07-13       Impact factor: 2.537

6.  Evolving perspectives on genetic discrimination in health insurance among health care providers.

Authors:  Carin R Huizenga; Katrina Lowstuter; Kimberly C Banks; Veronica I Lagos; Virginia O Vandergon; Jeffrey N Weitzel
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7.  Guidelines for genetic risk assessment of hereditary breast and ovarian cancer: early disagreements and low utilization.

Authors:  Douglas E Levy; Judy E Garber; Alexandra E Shields
Journal:  J Gen Intern Med       Date:  2009-05-20       Impact factor: 5.128

8.  Patient-reported hereditary breast and ovarian cancer in a primary care practice.

Authors:  John M Quillin; Alexander H Krist; Maria Gyure; Rosalie Corona; Vivian Rodriguez; Joseph Borzelleca; Joann N Bodurtha
Journal:  J Community Genet       Date:  2013-07-20

9.  Hereditary breast and ovarian cancer syndrome : the impact of race on uptake of genetic counseling and testing.

Authors:  Michael S Simon; Nancie Petrucelli
Journal:  Methods Mol Biol       Date:  2009

10.  Public awareness and use of direct-to-consumer personal genomic tests from four state population-based surveys, and implications for clinical and public health practice.

Authors:  Katherine Kolor; Debra Duquette; Amy Zlot; Joan Foland; Beth Anderson; Rebecca Giles; Jennifer Wrathall; Muin J Khoury
Journal:  Genet Med       Date:  2012-07-19       Impact factor: 8.822

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  15 in total

Review 1.  Global trends on fears and concerns of genetic discrimination: a systematic literature review.

Authors:  Annet Wauters; Ine Van Hoyweghen
Journal:  J Hum Genet       Date:  2016-01-07       Impact factor: 3.172

2.  Prohibiting Genetic Discrimination to Promote Science, Health, and Fairness.

Authors: 
Journal:  Am J Hum Genet       Date:  2019-01-03       Impact factor: 11.025

3.  Pediatric Whole Exome Sequencing: an Assessment of Parents' Perceived and Actual Understanding.

Authors:  Leandra K Tolusso; Kathleen Collins; Xue Zhang; Jennifer R Holle; C Alexander Valencia; Melanie F Myers
Journal:  J Genet Couns       Date:  2016-12-16       Impact factor: 2.537

Review 4.  Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications.

Authors:  Danielle M Dick; Peter Barr; Mignonne Guy; Aashir Nasim; Denise Scott
Journal:  Am J Addict       Date:  2017-02-27

Review 5.  APOL1 Genetic Testing in Living Kidney Transplant Donors.

Authors:  Sumit Mohan; Ana S Iltis; Deirdre Sawinski; James M DuBois
Journal:  Am J Kidney Dis       Date:  2019-04-11       Impact factor: 8.860

6.  Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA).

Authors:  Anya E R Prince; Wendy R Uhlmann; Sonia M Suter; Aaron M Scherer
Journal:  Risk Manag Insur Rev       Date:  2021-11-19

7.  Evolution of Hereditary Breast Cancer Genetic Services: Are Changes Reflected in the Knowledge and Clinical Practices of Florida Providers?

Authors:  Deborah Cragun; Courtney Scherr; Lucia Camperlengo; Susan T Vadaparampil; Tuya Pal
Journal:  Genet Test Mol Biomarkers       Date:  2016-08-15

Review 8.  Confidentiality & the Risk of Genetic Discrimination: What Surgeons Need to Know.

Authors:  Amanda Gammon; Deborah W Neklason
Journal:  Surg Oncol Clin N Am       Date:  2015-07-16       Impact factor: 3.495

9.  Study protocol: the Australian genetics and life insurance moratorium-monitoring the effectiveness and response (A-GLIMMER) project.

Authors:  Louise Keogh; Paul Lacaze; Jane Tiller; Aideen McInerney-Leo; Andrea Belcher; Tiffany Boughtwood; Penny Gleeson; Martin Delatycki; Kristine Barlow-Stewart; Ingrid Winship; Margaret Otlowski
Journal:  BMC Med Ethics       Date:  2021-05-21       Impact factor: 2.652

Review 10.  Genes, cells, and biobanks: Yes, there's still a consent problem.

Authors:  Timothy Caulfield; Blake Murdoch
Journal:  PLoS Biol       Date:  2017-07-25       Impact factor: 8.029

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