Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients

作者: Kira A Apse , Barbara B Biesecker , Francis M Giardiello , Barbara P Fuller , Barbara A Bernhardt

DOI: 10.1097/01.GIM.0000144013.96456.6C

关键词:

摘要: Purpose: To explore the concerns of at-risk relatives colorectal cancer patients about genetic discrimination and their awareness current legislative protections. Methods: A questionnaire was sent to unaffected individuals with a family history who had enrolled in Johns Hopkins Hereditary Colorectal Cancer Registry (N = 777). Results: Of 470 respondents, approximately half rated level concern as high. The majority 79%, learned from at least one media source (television, newspapers, magazines, radio). If they were pursue testing, respondents higher would be significantly more likely pay out pocket, use an alias, or ask for test results excluded medical record. Awareness understanding legislation regarding found minimal. Conclusion: Findings this study demonstrate negative effect on decisions utilization services. Stronger protections against increased public education through scientific community sources are needed.

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