Purpose

More than a decade after the Genetic Information Nondiscrimination Act (GINA) was passed, there is a paucity of research on the general public’s awareness of GINA. This study’s objective was to assess knowledge of GINA and concerns of genetic discrimination.

Methods

A quota-based sample of US adults (N = 421) was recruited via Qualtrics Research Services to complete an online survey.

Results

Overall, participants had a mean age of 43.1 (SD = 13.9), 51.8% identified as female, 63.1% identified as non-Hispanic White, and 38.4% had ≥4-year college degree. Respondents reported relatively low subjective knowledge of GINA (M = 3.10, SD = 1.98; 7-point Likert scale). Among respondents reporting high subjective knowledge of GINA (16.2%), 92.6% incorrectly reported or did not know that GINA covers life, long-term care, and disability insurance, and this number was 82.4% for auto or property insurance. Respondents were relatively likely to decline genetic testing due to concerns about results being used to determine eligibility for employment (M = 4.68, SD = 1.89) or health insurance (M = 4.94, SD = 1.73). There were few consistent demographic associations with either subjective or objective knowledge of GINA.

Conclusion

This study highlights continued public concern about genetic discrimination and a lack of awareness and understanding of GINA and its scope of protections.

中文翻译：

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《遗传信息非歧视法》（GINA）在通过十多年后持续缺乏知识和误解

目的

在《遗传信息非歧视法》（GINA）通过十多年后，对公众对 GINA 的认识缺乏研究。本研究的目的是评估 GINA 的知识和对遗传歧视的担忧。

方法

通过 Qualtrics Research Services 招募了基于配额的美国成年人样本 ( N  = 421) 以完成在线调查。

结果

总体而言，参与者的平均年龄为 43.1 岁（SD = 13.9），51.8% 被确定为女性，63.1% 被确定为非西班牙裔白人，38.4% 具有≥4 年的大学学位。受访者报告的 GINA 主观知识相对较低（M = 3.10，SD = 1.98；李克特 7 点量表）。在对 GINA 有较高主观认识的受访者中（16.2%），92.6% 的人错误地报告或不知道 GINA 涵盖人寿、长期护理和伤残保险，而汽车或财产保险的这一数字为 82.4%。由于担心结果被用于确定就业资格（M = 4.68，SD = 1.89）或健康保险（M = 4.94，SD = 1.73），受访者相对可能拒绝基因检测。与 GINA 的主观或客观知识几乎没有一致的人口统计学关联。

结论

这项研究强调了公众对基因歧视的持续关注，以及对 GINA 及其保护范围缺乏认识和理解。