Division of Clinical Cancer Genetics, City of Hope, 1500 East Duarte Road, Duarte, CA 91010, USA.
Fam Cancer. 2010 Jun;9(2):253-60. doi: 10.1007/s10689-009-9308-y.
Previous studies have documented that concerns about genetic discrimination (GD) may influence access to and participation in medically necessary care. We sought to characterize how GD issues influence current cancer genetics professional (CGP) practice, determine if their attitudes regarding GD have changed over time, and compare their knowledge and attitudes regarding laws prohibiting GD to a contemporary cohort of non-genetics clinicians. Members of the National Society of Genetic Counselors Familial Cancer Special Interest Group were invited to complete a 39 item online survey, adapted from previously published instruments. The resulting data were compared to a survey of CGPs published in 2000 and to a contemporary cohort of non-genetics clinicians (n = 1,181). There were 153 qualified respondents. Compared to the historical CGP cohort (n = 163), a significantly greater proportion said they would bill insurance for the cost of genetic testing for themselves (P < 0.0001). Most CGPs (94%) considered the risk of GD to be low to theoretical, concordant with 64% who expressed confidence in existing federal laws prohibiting GD. The mean knowledge score of CGPs regarding GD protective laws was significantly greater than that of non-genetics clinicians (P < 0.001). As barometers of change, CGPs show a migration in opinion over the past 8 years, with decreased fear of GD and greater knowledge of laws prohibiting GD compared to non-genetics clinicians. Better knowledge of GD and protective legislation, may facilitate non-genetics clinician utilization of genetics and personalized medicine.
先前的研究已经证明，对遗传歧视（GD）的担忧可能会影响获得和参与必要医疗的机会。我们试图描述 GD 问题如何影响当前的癌症遗传学专业人员（CGP）的实践，确定他们对 GD 的态度是否随时间而变化，并将他们对禁止 GD 的法律的知识和态度与当代非遗传学临床医生进行比较。国家遗传咨询师协会家族癌症特别兴趣小组的成员被邀请完成了 39 项在线调查，该调查改编自以前发表的工具。将所得数据与 2000 年发表的 CGP 调查以及当代非遗传学临床医生（n = 1,181）的队列进行了比较。有 153 名合格的受访者。与历史上的 CGP 队列（n = 163）相比，有更大比例的人表示他们会为自己的遗传检测费用向保险公司报销（P < 0.0001）。大多数 CGP（94%）认为 GD 的风险是低到理论上的，这与 64%的人对现有的禁止 GD 的联邦法律表示有信心是一致的。CGP 对 GD 保护法的平均知识得分明显高于非遗传学临床医生（P < 0.001）。作为变化的晴雨表，CGP 的观点在过去 8 年中发生了转变，他们对 GD 的恐惧减少了，对禁止 GD 的法律的了解也增加了，与非遗传学临床医生相比。对 GD 和保护立法的更好了解，可能会促进非遗传学临床医生对遗传学和个性化医学的利用。
