Literature DB >> 15043057

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

Nicole L Pfeffer1, Patricia McCarthy Veach, Bonnie S LeRoy.   

Abstract

Twenty-five genetic counselors who see familial cancer risk patients were interviewed about their definitions of genetic discrimination, perceptions of patient risk for discrimination, frequency and type of discrimination experienced by their patients, sources of information about discrimination, and what they tell patients about genetic discrimination. There was variability in participant definitions and content of discussions of genetic discrimination. Although 82% regarded risk to be low to theoretical, 40% reported possible instances of genetic discrimination, including insurance companies requiring results to cover procedures, denial of life/health insurance, social discrimination, and employment discrimination. Ninety-six percent of the sample reported always or almost always discussing genetic discrimination, and one or more of the following: insurance discrimination risks, protective legislation, no known cases positively documenting discrimination, strategies to avoid discrimination, and uncertainty of protective measures. The majority use current literature and research as information sources. Practice, policy, and research implications are discussed.

Entities:  

Keywords:  Empirical Approach; Genetics and Reproduction

Mesh:

Year:  2003        PMID: 15043057     DOI: 10.1023/a:1025816820243

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


  21 in total

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Journal:  J Law Med Ethics       Date:  1998       Impact factor: 1.718

2.  Coding for change: the power of the human genome to transform the American Health Insurance System.

Authors:  Jennifer S Geetter
Journal:  Am J Law Med       Date:  2002

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Authors:  K Armstrong; K Calzone; J Stopfer; G Fitzgerald; J Coyne; B Weber
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2000-11       Impact factor: 4.254

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Authors:  J E Stopfer
Journal:  Semin Surg Oncol       Date:  2000-06

6.  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

7.  A descriptive study of BRCA1 testing and reactions to disclosure of test results.

Authors:  H T Lynch; S J Lemon; C Durham; S T Tinley; C Connolly; J F Lynch; J Surdam; E Orinion; S Slominski-Caster; P Watson; C Lerman; P Tonin; G Lenoir; O Serova; S Narod
Journal:  Cancer       Date:  1997-06-01       Impact factor: 6.860

8.  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

9.  A survey of genetic counselors' strategies for addressing ethical and professional challenges in practice.

Authors:  Matthew A Bower; Patricia McCarthy Veach; Dianne M Bartels; Bonnie S LeRoy
Journal:  J Genet Couns       Date:  2002-06       Impact factor: 2.537

10.  Points to consider in preventing unfair discrimination based on genetic disease risk: a position statement of the American College of Medical Genetics.

Authors:  M S Watson; C L Greene
Journal:  Genet Med       Date:  2001 Nov-Dec       Impact factor: 8.822

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  10 in total

1.  Stigmatization and male identity: Norwegian males' experience after identification as BRCA1/2 mutation carriers.

Authors:  Nina Strømsvik; Målfrid Råheim; Nina Oyen; Lars Fredrik Engebretsen; Eva Gjengedal
Journal:  J Genet Couns       Date:  2010-03-20       Impact factor: 2.537

2.  Civilian and military genetics: nondiscrimination policy in a post-GINA world.

Authors:  Susannah Baruch; Kathy Hudson
Journal:  Am J Hum Genet       Date:  2008-10       Impact factor: 11.025

3.  Family physicians' awareness and knowledge of the Genetic Information Non-Discrimination Act (GINA).

Authors:  Amanda L Laedtke; Suzanne M O'Neill; Wendy S Rubinstein; Kristen J Vogel
Journal:  J Genet Couns       Date:  2011-09-07       Impact factor: 2.537

4.  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
Journal:  Fam Cancer       Date:  2010-06       Impact factor: 2.375

5.  Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease.

Authors:  Yvonne Bombard; Elizabeth Penziner; Oksana Suchowersky; Mark Guttman; Jane S Paulsen; Joan L Bottorff; Michael R Hayden
Journal:  Eur J Hum Genet       Date:  2007-10-24       Impact factor: 4.246

6.  The impact of social roles on the experience of men in BRCA1/2 families: implications for counseling.

Authors:  Mary B Daly
Journal:  J Genet Couns       Date:  2008-08-08       Impact factor: 2.537

7.  Attitudes and practice of genetic counselors regarding anonymous testing for BRCA1/2.

Authors:  Tammy Ader; Lisa R Susswein; Nancy P Callanan; James P Evans
Journal:  J Genet Couns       Date:  2009-10-02       Impact factor: 2.537

8.  The establishment of an ethical guideline for genetic testing through citizen consensus via the Internet in Taiwan.

Authors:  Chiou-Fen Lin; Meei-Shiow Lu; Chun-Chih Chung; Che-Ming Yang
Journal:  J Med Internet Res       Date:  2010-10-18       Impact factor: 5.428

9.  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

10.  Investigating men's motivations to engage in genetic screening for BRCA1 and BRCA2 mutations.

Authors:  Anna Maria Annoni; Claudia Longhini
Journal:  PLoS One       Date:  2022-03-18       Impact factor: 3.240

  10 in total

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