Literature DB >> 19967457

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

Carin R Huizenga1, Katrina Lowstuter, Kimberly C Banks, Veronica I Lagos, Virginia O Vandergon, Jeffrey N Weitzel.   

Abstract

Previous studies have documented that concerns about genetic discrimination (GD) may influence access to and participation in medically necessary care. We sought to characterize how GD issues influence current cancer genetics professional (CGP) practice, determine if their attitudes regarding GD have changed over time, and compare their knowledge and attitudes regarding laws prohibiting GD to a contemporary cohort of non-genetics clinicians. Members of the National Society of Genetic Counselors Familial Cancer Special Interest Group were invited to complete a 39 item online survey, adapted from previously published instruments. The resulting data were compared to a survey of CGPs published in 2000 and to a contemporary cohort of non-genetics clinicians (n = 1,181). There were 153 qualified respondents. Compared to the historical CGP cohort (n = 163), a significantly greater proportion said they would bill insurance for the cost of genetic testing for themselves (P < 0.0001). Most CGPs (94%) considered the risk of GD to be low to theoretical, concordant with 64% who expressed confidence in existing federal laws prohibiting GD. The mean knowledge score of CGPs regarding GD protective laws was significantly greater than that of non-genetics clinicians (P < 0.001). As barometers of change, CGPs show a migration in opinion over the past 8 years, with decreased fear of GD and greater knowledge of laws prohibiting GD compared to non-genetics clinicians. Better knowledge of GD and protective legislation, may facilitate non-genetics clinician utilization of genetics and personalized medicine.

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Year:  2010        PMID: 19967457     DOI: 10.1007/s10689-009-9308-y

Source DB:  PubMed          Journal:  Fam Cancer        ISSN: 1389-9600            Impact factor:   2.375


  22 in total

1.  Genetic discrimination: the clinician perspective.

Authors:  R Nedelcu; K R Blazer; B U Schwerin; P Gambol; P Mantha; G C Uman; J N Weitzel
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2.  Attitudes and misconceptions about predictive genetic testing for cancer risk.

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3.  Keeping pace with the times--the Genetic Information Nondiscrimination Act of 2008.

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Journal:  N Engl J Med       Date:  2008-06-19       Impact factor: 91.245

4.  What would you do? Specialists' perspectives on cancer genetic testing, prophylactic surgery, and insurance discrimination.

Authors:  E T Matloff; H Shappell; K Brierley; B A Bernhardt; W McKinnon; B N Peshkin
Journal:  J Clin Oncol       Date:  2000-06       Impact factor: 44.544

5.  Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer.

Authors:  Donald W Hadley; Jean Jenkins; Eileen Dimond; Kenneth Nakahara; Liam Grogan; David J Liewehr; Seth M Steinberg; Ilan Kirsch
Journal:  Arch Intern Med       Date:  2003-03-10

Review 6.  The breast surgeon's role in BRCA1 and BRCA2 testing.

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7.  Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing.

Authors:  C Lerman; B Biesecker; J L Benkendorf; J Kerner; A Gomez-Caminero; C Hughes; M M Reed
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8.  Concerns in a primary care population about genetic discrimination by insurers.

Authors:  Mark A Hall; Jean E McEwen; James C Barton; Ann P Walker; Edmund G Howe; Jacob A Reiss; Tara E Power; Shellie D Ellis; Diane C Tucker; Barbara W Harrison; Gordon D McLaren; Andrea Ruggiero; Elizabeth J Thomson
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9.  Ethical and professional challenges posed by patients with genetic concerns: a report of focus group discussions with genetic counselors, physicians, and nurses.

Authors:  P M Veach; D M Bartels; B S LeRoy
Journal:  J Genet Couns       Date:  2001-04       Impact factor: 2.537

10.  An investigation of genetic counselors' discussion of genetic discrimination with cancer risk patients.

Authors:  Nicole L Pfeffer; Patricia McCarthy Veach; Bonnie S LeRoy
Journal:  J Genet Couns       Date:  2003-10       Impact factor: 2.537

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  12 in total

1.  Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act.

Authors:  Dawn C Allain; Sue Friedman; Leigha Senter
Journal:  Fam Cancer       Date:  2012-12       Impact factor: 2.375

2.  Barriers to and motivations for physician referral of patients to cancer genetics clinics.

Authors:  Carrie F Prochniak; Lisa J Martin; Erin M Miller; Sara C Knapke
Journal:  J Genet Couns       Date:  2011-08-13       Impact factor: 2.537

3.  "Would you test your children without their consent?" and other sticky dilemmas in the field of cancer genetic testing.

Authors:  Karina L Brierley; Danielle C Bonadies; Anne Moyer; Ellen T Matloff
Journal:  Fam Cancer       Date:  2014-09       Impact factor: 2.375

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

Authors:  Alicia A Parkman; Joan Foland; Beth Anderson; Debra Duquette; Holly Sobotka; Mary Lynn; Shelley Nottingham; William David Dotson; Katherine Kolor; Summer L Cox
Journal:  J Genet Couns       Date:  2014-09-23       Impact factor: 2.537

5.  Why is genetic screening for autosomal dominant disorders underused in families? The case of hereditary hemorrhagic telangiectasia.

Authors:  Barbara A Bernhardt; Cara Zayac; Reed E Pyeritz
Journal:  Genet Med       Date:  2011-09       Impact factor: 8.822

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

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Journal:  BMC Med Ethics       Date:  2021-05-21       Impact factor: 2.652

Review 7.  Personal genome testing: test characteristics to clarify the discourse on ethical, legal and societal issues.

Authors:  Eline M Bunnik; Maartje H N Schermer; A Cecile J W Janssens
Journal:  BMC Med Ethics       Date:  2011-06-14       Impact factor: 2.652

8.  Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors.

Authors:  Michelle Lane; Ida Ngueng Feze; Yann Joly
Journal:  J Genet Couns       Date:  2015-05-01       Impact factor: 2.537

9.  Development and validation of the cancer self-perceived discrimination scale for Chinese cancer patients.

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Journal:  Health Qual Life Outcomes       Date:  2018-08-14       Impact factor: 3.186

10.  Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers.

Authors:  Gratien Dalpé; Ida Ngueng Feze; Shahad Salman; Yann Joly; Julie Hagan; Emmanuelle Lévesque; Véronique Dorval; Jolyane Blouin-Bougie; Nabil Amara; Michel Dorval; Jacques Simard
Journal:  Front Genet       Date:  2017-09-21       Impact factor: 4.599

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