Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients
Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients
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DOI：
10.1097/01.gim.0000144013.96456.6c
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发表时间：
2004-11-01
影响因子：
8.8
通讯作者：
Bernhardt, BA
中科院分区：
文献类型：
--
作者：
Apse, KA;Biesecker, BB;Bernhardt, BA
目的：探讨结直肠癌患者高危亲属对基因歧视的担忧以及他们对当前立法保护的认识。方法：向参加约翰·霍普金斯遗传性结直肠癌登记处的有结直肠癌家族史的未受影响的个人发送问卷（N = 777）。结果：在470名受访者中，大约一半的人认为他们对基因歧视的关注程度很高。大多数受访者（79%）至少从一种媒体（电视、报纸、杂志和广播）了解到基因歧视。如果他们要进行基因检测，对基因歧视有更高关注度的受访者更有可能自掏腰包，使用化名，或要求将检测结果从他们的医疗记录中排除。认识和了解有关遗传歧视的立法被认为是minimal.Conclusion：从这项研究的结果表明，遗传歧视的决定利用遗传服务的负面影响的关注。需要加强立法保护，防止基因歧视，并通过科学界和媒体加强公众教育。
Purpose: To explore the concerns of at-risk relatives of colorectal cancer patients about genetic discrimination and their awareness of current legislative protections.Methods: A questionnaire was sent to unaffected individuals with a family history of colorectal cancer who had enrolled in the Johns Hopkins Hereditary Colorectal Cancer Registry (N = 777).Results: Of the 470 respondents, approximately half rated their level of concern about genetic discrimination as high. The majority of respondents, 79%, learned about genetic discrimination from at least one media source (television, newspapers, magazines, and radio). If they were to pursue genetic testing, respondents with a higher level of concern about genetic discrimination would be significantly more likely to pay out of pocket, use an alias, or ask for test results to be excluded from their medical record. Awareness and understanding of legislation regarding genetic discrimination was found to be minimal.Conclusion: Findings from this study demonstrate the negative effect of concerns about genetic discrimination on decisions about utilization of genetic services. Stronger legislative protections against genetic discrimination and increased public education through the scientific community and media sources are needed.