Division of Maternal-Fetal Medicine, Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, Pennsylvania, USA.
Division of Maternal-Fetal Medicine, Indiana University School of Medicine, Indianapolis, Indiana, USA.
Prenat Diagn. 2023 Aug;43(9):1142-1149. doi: 10.1002/pd.6405. Epub 2023 Jul 12.
To highlight the possibility of genetic discrimination in the United States with respect to carrier screening under limitations of the Genetic Information Nondiscrimination Act (GINA) and to encourage providers to educate patients about this possibility during pretest counseling.
Review of current professional guidelines and practice resources regarding the necessary components of pretest counseling for carrier screening in the context of GINA's limitations and the potential impact of carrier screening results on life, long-term care and disability insurance.
Current practice resources advise that patients in the United States should be informed that their employer or health insurance company generally cannot use their genetic information during the underwriting process. However, these resources do not elaborate on GINA's limitations or explain why there may be adverse consequences to patients regarding these limitations. Studies have demonstrated significant gaps in provider knowledge of GINA, especially for those without formal genetic training.
Enhanced education and provision of GINA educational resources for providers and patients will help ensure that patients have the opportunity to prioritize their insurance needs prior to undergoing carrier screening.
强调在美国，由于《遗传信息非歧视法案》（GINA）的限制，携带者筛查可能存在基因歧视，并鼓励提供者在检测前咨询中向患者告知这种可能性。
审查当前专业指南和实践资源，了解在 GINA 限制范围内进行携带者筛查的检测前咨询的必要组成部分，以及携带者筛查结果对生活、长期护理和残疾保险的潜在影响。
目前的实践资源建议，美国的患者应该被告知，他们的雇主或健康保险公司通常不能在承保过程中使用他们的遗传信息。然而，这些资源并没有详细说明 GINA 的限制，也没有解释为什么这些限制可能对患者造成不利后果。研究表明，提供者对 GINA 的了解存在明显差距，特别是对于那些没有接受过正规遗传培训的人。
加强对提供者和患者的 GINA 教育和提供 GINA 教育资源，将有助于确保患者有机会在进行携带者筛查之前优先考虑他们的保险需求。
