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Cancer Health Center

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Cancer Genetics Risk Assessment and Counseling (PDQ®): Genetics - Health Professional Information [NCI] - Ethical, Legal, and Social Implications

Table 2. State Case Laws That Apply to Duty to Warn continued...

In a smaller study of 47 unaffected BRCA or mismatch repair mutation carriers, a few instances of denial or limitation of life and health insurance benefits were reported following genetic testing; however, it was not possible to determine whether these adverse effects were directly related to the results of genetic testing. Nonetheless, a subset of mutation carriers reported that they paid for genetic testing out-of-pocket to avoid possible insurance discrimination (32%), had relatives who did not have genetic testing because of discrimination concerns (13%), and expressed reluctance to seek new job opportunities because of concerns about insurance coverage (13%).[27]

A 2007 survey of members of the National Society of Genetic Counselors' (NSGC) Cancer Special Interest Group found that 94% perceived the risk of genetic discrimination to be low, very low, or theoretical.[28] Most reported that they felt very or somewhat confident in the ability of U.S. federal and state laws (64% and 70%, respectively) to protect against genetic discrimination for cancer predisposition testing. Most disagreed that there are problems with health insurance as a result of having genetic testing, either for a person with (93%) or without (79%) a cancer diagnosis. The results of this study suggest that genetic counselors, who are on the forefront or providing risk assessment and counseling for hereditary cancers, may perceive the risk of genetic discrimination to be low and believe that existing state and federal laws offer adequate protection. Nonetheless, 35% of the NSGC sample agreed that patients may decline genetic testing for hereditary cancer risk because of concerns about health insurance discrimination. In addition, all respondents reported discussing genetic discrimination with some proportion of their patients, and 87% reported that they offer reassuring information about genetic discrimination to their patients.

(Refer to the Informed Consent and Exploration of potential risks, benefits, burdens, and limitations of genetic susceptibility testing subsections of this summary for more information about discrimination issues related to cancer genetics services.)

Legal proceedings, federal/state legislation, and recommendations of professional organizations

A legal case example at the federal district court level involves the Burlington Northern Santa Fe Railroad. The U.S. Equal Employment and Opportunities Commission requested that Burlington Northern Santa Fe Railroad not be allowed to use medical information obtained from genetic tests for employment decisions.[24]

In the last 15 years, state and federal legislation statutes have been developed to prevent the use of genetic information for employment practices, such as hiring, promotion, and salary decisions; and insurance policies, including life and health coverage, by employers, schools, government agencies, and insurers.[12] According to Executive Order 13145, federal departments and agencies are prohibited from discriminating against employees on the basis of genetic testing results or information about a request for genetic testing services.[24] Employers and insurers are prohibited from intentionally lowering policy rates by using practices such as screening for individuals who are at risk of becoming ill or dying due to genetic disease susceptibility, such as cancer.[24] Federal laws, including GINA, do not cover employer-provided life and disability; however, some states do have legislation addressing the use of genetic information for life and disability policies. The National Conference of State Legislatures (NCSL) [29,30] summarized current health legislation of the U.S. Congress. Examples of relevant legislation regarding genetic information include, GINA, HIPAA, Americans with Disabilities Act (ADA), and Employee Retirement Income Security Act (ERISA).

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