《遗传信息非歧视法案》颁布10周年:基因信息非歧视法案关于数据透明度保护隐私和公民权利的争议性主张
THE GENETIC INFORMATION NONDISCRIMINATION ACT AT AGE 10: GINA'S CONTROVERSIAL ASSERTION THAT DATA TRANSPARENCY PROTECTS PRIVACY AND CIVIL RIGHTS.
作者信息
Evans Barbara J
机构信息
Center for Biotechnology & Law, University of Houston Law Center; Cullen College of Engineering, University of Houston.
出版信息
William Mary Law Rev. 2019;60(6):2017-2109.
The genomic testing industry is an edifice built on data transparency: transparent and often unconsented sharing of our genetic information with researchers to fuel scientific discovery, transparent sharing of our test results to help regulators infer whether the tests are safe and effective, and transparent sharing of our health information to help treat other patients on the premise that we gain reciprocity of advantage when each person's health care is informed by the best available data about all of us. Transparency undeniably confers many social benefits but creates risks to the civil rights of the people whose genetic information is shared. Touted as a major civil rights law at the time of its passage, the Genetic Information Nondiscrimination Act of 2008 (GINA) has endured ten years of criticism that its protections are ineffectual, insufficient, or even unethical and overtly unsafe for the people it aims to protect. At the center of this controversy are provisions of GINA that expand people's access to genetic information that others store about them-a heavily contested assertion that data transparency implies sharing data not just with third parties, but with the people whose data are being shared. This Article traces the decades-long roots of this assertion and explores pathways to resolve the controversy that engulfs it. It is important to resolve this controversy. As GINA enters its second decade, genomics is finally starting to gain sufficient predictive power to support discriminatory and other nefarious uses that GINA was designed to prevent. We are entering a positive feedback loop in which the genomic research that exposes us to risk of unwanted data disclosures simultaneously fuels discoveries that make such disclosures potentially more damaging.
基因检测行业是建立在数据透明基础上的大厦
我们的基因信息被透明且常常未经同意地与研究人员共享,以推动科学发现;检测结果被透明共享,以帮助监管机构推断检测是否安全有效;健康信息被透明共享,以帮助治疗其他患者,前提是当每个人的医疗保健都基于关于我们所有人的最佳可用数据时,我们能获得互惠的好处。不可否认,透明度带来了许多社会效益,但也给那些基因信息被共享的人的民权带来了风险。2008年的《基因信息非歧视法案》(GINA)在通过时被誉为一项主要的民权法案,但十年来一直饱受批评,称其保护措施无效、不足,甚至对其旨在保护的人不道德且公然不安全。这场争议的核心是GINA的一些条款,这些条款扩大了人们获取他人存储的关于自己的基因信息的途径——这是一个备受争议的主张,即数据透明意味着不仅要与第三方共享数据,还要与数据被共享的人共享。本文追溯了这一主张数十年的根源,并探索解决围绕它的争议的途径。解决这场争议很重要。随着GINA进入第二个十年,基因组学终于开始获得足够的预测能力,以支持GINA旨在防止的歧视性和其他邪恶用途。我们正在进入一个正反馈循环,在这个循环中,使我们面临不必要数据披露风险的基因组研究同时推动了一些发现,这些发现可能会使此类披露的危害更大。