2000
DOI: 10.1200/jco.2000.18.12.2484
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What Would You Do? Specialists’ Perspectives on Cancer Genetic Testing, Prophylactic Surgery, and Insurance Discrimination

Abstract: A large percentage of cancer genetic counseling providers predicted they would opt for prophylactic surgery at a young age if they carried a BRCA or HNPCC mutation, and most would seek professional psychologic assistance when undergoing testing. More than half of respondents would not bill their insurance companies for genetic testing, largely because of fear of genetic discrimination. The vast majority of those providers most familiar with cancer genetic testing and its associated medical, psychologic, and le… Show more

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Cited by 102 publications
(67 citation statements)
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“…Thus, we are unable to know with certainty whether more instances of discrimination were experienced by those with genetic conditions, or whether, when an employment or insurance rejection occurred, these participants were more sensitive to the possibility of disease-based discrimination, given that genetic counseling sessions and legislation both have stressed that discrimination might exist for those with genetic conditions. Indeed, there is some evidence that genetic counselors have heightened concerns about genetic discrimination, and they may be likely to pass those concerns on to their clients [Matloff et al, 2000]. Our interviewers asked respondents to produce documentation for every reported instance of discrimination, but respondents generally had little hard evidence.…”
Section: Discussionmentioning
confidence: 99%
“…Thus, we are unable to know with certainty whether more instances of discrimination were experienced by those with genetic conditions, or whether, when an employment or insurance rejection occurred, these participants were more sensitive to the possibility of disease-based discrimination, given that genetic counseling sessions and legislation both have stressed that discrimination might exist for those with genetic conditions. Indeed, there is some evidence that genetic counselors have heightened concerns about genetic discrimination, and they may be likely to pass those concerns on to their clients [Matloff et al, 2000]. Our interviewers asked respondents to produce documentation for every reported instance of discrimination, but respondents generally had little hard evidence.…”
Section: Discussionmentioning
confidence: 99%
“…In 1996, Maryland enacted a law prohibiting health insurers from using genetic test results to make coverage decisions or to modify rates or terms of health insurance policies. Despite this, many remain concerned about the potential negative impact of genetic information on insurability, 16,35 and many women in our series chose to pay out-ofpocket for confidentiality reasons. Of the patients who sought insurance reimbursement for the more costly full gene sequencing, greater than half (7 of 13) had a prior diagnosis of breast or ovarian carcinoma and would have been less concerned about insurance discrimination based on the results of a genetic test.…”
Section: Potential Obstacles To Brca1/2 Testingmentioning
confidence: 99%
“…En outre, cette activité de transfert se trouve dans une situation où l'on retrouve les facteurs classiques de diffusion de l'innovation, mais aussi ceux plus spécifiques de l'identification d'un risque sur une base biologique, susceptibles de jouer beaucoup sur la demande réelle d'examens. Nous ne ferons qu'évoquer parmi ces derniers, la question de l'assurance [19][20][21] et les risques de discrimination [14,22] qui peuvent dissuader les patients de réaliser ces tests [23,24]. Si ces risques sont très pré-sents outre-Atlantique, où 68% des généticiens spéciali-sés en cancérologie craindraient pour eux-mêmes une discrimination de la part de leur assurance maladie [23], il semble que la législation française, beaucoup plus protectrice, soit un facteur favorisant davantage la demande de tests (lois de bioéthique et loi n°2002-303 de mars 2002 relative aux droits des malades et à la qualité du système de santé).…”
Section: Les Raisons De Cette éVolutionunclassified
“…Nous ne ferons qu'évoquer parmi ces derniers, la question de l'assurance [19][20][21] et les risques de discrimination [14,22] qui peuvent dissuader les patients de réaliser ces tests [23,24]. Si ces risques sont très pré-sents outre-Atlantique, où 68% des généticiens spéciali-sés en cancérologie craindraient pour eux-mêmes une discrimination de la part de leur assurance maladie [23], il semble que la législation française, beaucoup plus protectrice, soit un facteur favorisant davantage la demande de tests (lois de bioéthique et loi n°2002-303 de mars 2002 relative aux droits des malades et à la qualité du système de santé). Dans tous les cas, la notion de diffusion de l'information dans les familles est essentielle à prendre en compte, car les médecins ne peuvent pas informer directement les apparentés à risque de l'existence d'une mutation familiale.…”
Section: Les Raisons De Cette éVolutionunclassified