Ten years ago, the Genetic Information Nondiscrimination Act (‘GINA’) came into law. While it was unclear how prent genetic discrimination was, GINA was enacted preemptively to prevent discrimination in insurance and employment. It also created uniform protections to remedy a confusing patchwork of state and federal protections. Finally, Congress hoped GINA would allay public fears of genetic discrimination that discouraged people from undergoing genetic testing and participating in genetics research. To address those fears, Congress enacted robust protections against genetic discrimination in health insurance and employment

十(二)年前,《基因信息反歧视法案》生效。虽然不清楚社会对遗传基因的歧视有多普遍,但《基因信息反歧视法案》的颁布是为了预防保险和就业方面的歧视。法案还制定了统一的保护措施,以弥补州和联邦保护措施的混乱。最后,国会希望《基因信息反歧视法案》能减轻公众对基因歧视的恐惧,这种恐惧阻碍了人们接受基因检测和参与基因研究的意愿。为了消除这些担忧,国会制定了强有力的保护措施,以防止医疗保险和就业领域的基因歧视。



Major advances in genetics research, such as the federal funding in 1990 of the Human Genome Project (‘HGP’), stoked concerns about genetic discrimination. The federal government planned to invest $3 billion to decode the full sequence of the 3 billion base-pair human genome and to identify all of its genes.11 In ‘herald[ing] the “genomic age”’,12 the HGP and other genetics research were intended to expand our ability to identify genetic risks and understand the role of genetics in disease. While such information promised to improve preventive and precision medicine, it reinforced a growing propensity to understand and explain human illness and traits in genetics terms, perpetuating the allure of genetics determinism—the idea that our ‘genes determine and explain everything about us’.13 Such attitudes heightened worries among scholars and legislators that employers and insurers would increasingly find genetic information useful in predicting the health risk of individuals and perhaps even define them according to their genetic make-up. In other words, it threatened genetic discrimination.

随着科学进步,遗传学研究方面的重大进展,如1990年联邦政府对人类基因组计划(HGP)的资助,引发了人们对基因歧视的担忧。联邦政府计划投资30亿美元解码人类30亿碱基对基因组的全部序列,并识别其所有基因。HGP和其他遗传学研究旨在扩大我们识别遗传风险和理解遗传在疾病中的作用。
虽然这些信息有望预防遗传疾病和改进精准医学技术,但它增强了人们从遗传学角度理解和解释人类疾病和特征的倾向,使基因与个人永久绑定在一起。即“基因决定和解释了关于我们的一切”。
这种态度加剧了学者和立法者的担忧,他们担心雇主和保险公司会利用基因信息来预测评估个人的健康风险,甚至可能根据基因构成来定义雇员和受保人。换句话说,它产生了基因歧视。



GINA comprises three titles. The two main parts are Title I, which prohibits genetic discrimination with respect to health insurance, and Title II, which bans genetic discrimination in employment.32 Title I amends various federal laws to prohibit genetic discrimination by all forms of health insurance providers It protects against health insurance discrimination by proscribing various discriminatory uses of genetic information. Title I’s prohibitions of insurer access to genetic information. Thus, health plans or health insurance issuers of group or individual health insurance may not request or require individuals or their family members to undergo a genetic test. Nor may they request, require, or purchase an individual's genetic information for underwriting or enrollment purposes.
In addition, GINA also proscribes employers from acquiring genetic information. Thus, under GINA, employers may not ‘request, require, or purchase’ an employee's genetic information with a few exceptions.46

《基因信息反歧视法案》总共三章。两个主要部分集中在第一章—禁止在医疗保险方面的基因歧视,和第二章—禁止在就业方面的基因歧视。
法案第一章修订了多项联邦法律,保护个人或团体免受任何形式的医疗保险歧视。例如,《基因信息反歧视法案》禁止基于遗传信息来决定个人或团体的保险费或缴费率。
《基因信息反歧视法案》第一章禁止保险公司获得客户的基因信息。面向团体或个人的健康保险,不得要求个人或其家庭成员接受基因检测。他们也不得在承保或注册时询问,要求或购买客户的基因信息。
《基因信息反歧视法案》第二章禁止雇主获取雇员的基因信息。除了少数例外,雇主不得“询问、要求或购买”雇员的基因信息

The Poore two-tier approach to construing genetic information in terms of its predictive value continued in Maxwell v Verde Valley Ambulance Co., Inc.103 In that case, plaintiff Matthew Maxwell alleged that his employer, Verde Valley Ambulance Co. (‘VVAC’), required him, in violation of GINA, to ‘disclose “genetic information” in his family medical history’. Maxwell had told his supervisor that he was disabled due to a leg injury sustained prior to his employment. As a result, his employer requested he receive a medical uation to determine whether he ‘was qualified’ to perform his employment duties.104 his supervisor received the health and occupational history form that Maxwell completed, which indicated that his grandfather had had cancer.105 Maxwell alleged that VVAC violated GINA by ‘requesting, requiring, or purchasing genetic information’.106

在麦克斯韦控告佛谷救护公司一案中,原告麦克斯韦声称,他的雇主,佛谷救护公司要求他告知家族病史,违反了《基因信息反歧视法案》。麦克斯韦尔曾告诉他的主管,他在受雇前腿部受伤,导致残疾。因此,他的雇主要求他接受医疗评估,以确定他是否“有资格”履行其就业职责。随后主管收到了麦克斯韦尔填好的健康表和职业史表,该表表明他的祖父曾经患过癌症。麦克斯韦声称,佛谷救护公司通过“询问、要求或购买基因信息”,侵犯了《基因信息反歧视法案》赋予自己的权利。

A key issue in addressing the claim was whether the plaintiff's family medical history concerning his grandfather's cancer was ‘genetic information’ under GINA.108 it worried about the implication in the plaintiff's argument that an employer could face ‘strict liability’ any time it ‘receives information about an employee's family medical history’.110

在这一案件中,是否构成索赔的关键问题是,原告祖父患癌症的家族病史是否属于“遗传信息”。
以外,该案件还会对社会产生一个暗示,即一旦雇主“收到雇员的家庭病史信息”,就可能面临“严格的法律责任”

The statute states unambiguously that a manifested disease in a family member constitutes genetic information.
Second, Maxwell is a case in which the family history was potentially predictive. Cancer has both genetic and environmental components. Its diagnosis in an employee's relative therefore has potential predictive value in assessing future health risks in the employee. Whereas an employee's wife's diagnosis with multiple sclerosis and an employee's mother's AIDS diagnosis are not indicative of the employees’ future health risks, information about cancer in an employee's second-degree relative has potential predictive value about his propensity for cancer. It would seem, therefore, that such a family history should be genetic information as a matter of law: it both fulfills the definition and is consistent with the spirit of GINA.

根据《基因信息反歧视法案》明确规定,家庭成员的显性疾病史属于遗传信息。
家族病史具有潜在的疾病预测能力。癌症有遗传和环境两方面的因素。因此,员工亲属的病史,对评估员工未来健康风险具有潜在的预测价值。
举个例子,员工的妻子被诊断患有多发性硬化症,员工的母亲被诊断患有艾滋病,都不能预测员工未来的健康风险,但如果从员工的二级亲属那里获得癌症信息,那么对未来员工本人患癌症的几率预测是十分有价值的。因此,从法律的角度看,家族病史应该被归为遗传信息:这样做既符合《基因信息反歧视法案》的定义,也符合《基因信息反歧视法案》的精神。
(法院驳回了原告根据《基因信息反歧视法案》提出的索赔,因为雇主在解雇原告后,才收到原告的家庭病史,但部分批准原告提出的索赔要求。)

For example, in Punt v Kelly Services,128 employee Kristin Punt alleged that she was terminated from her employment based on her family history of cancer in violation of GINA. She had shared information with co-workers that her ‘mother, grandmother, great-grandmother, cousin, and aunt were all diagnosed with breast cancer’.129 The court readily concluded that such information ‘is the type of genetic information implicated by GINA’,
In spite of this more expansive understanding of GINA, however, Punt did not succeed because she failed to allege ‘sufficient evidence’ that her termination was based on her genetic information..

在蓬特控告凯利服务公司的案件中,雇员蓬特声称,她被解雇的原因是她的家族癌症病史,这违反了《基因信息反歧视法案》的规定。她曾与同事分享她的家族病史信息,她的“母亲、祖母、曾祖母、表亲和姑妈都被诊断出患有乳腺癌”。法院很快作出结论,认为这类信息属于《基因信息反歧视法案》规定的“遗传信息类型”。
然而,尽管蓬特对《基因信息反歧视法案》有充分的了解,但她没有胜诉,因为她没能提出“充分的证据”,证明雇主是基于她的基因信息而解雇了她。

Lee v City of Moraine Fire Dept. 133 similarly concluded that an employee's family history constitutes genetic information. In that case, David Lee's employer, Moraine Fire Department upxed its requirements for health and wellness physicals. As part of the revised process, Lee completed a questionnaire, which asked about family history of heart disease.134 Lee brought claims under GINA alleging that his employer had ‘unlawfully requested [his] genetic information and family history’.135 The court easily granted his motion for summary judgement on this basis.

大卫·李控告莫里恩市消防部门一案也证明了这一点,即雇员的家族病史也属于遗传信息。大卫·李的雇主—莫莱恩消防局要求员工进行健康体检。作为健康体检的一部分,李完成了一份调查问卷,问卷询问了关于心脏病家族史的问题。大卫·李随后提起诉讼,声称他的雇主“非法索取他的基因信息和家族病史”。在此基础上,法院很快批准了他要求即决判决的动议及索赔要求。

If an employee's father has Huntington's disease, the employee faces a 50% risk of developing Huntington's.190 And if her mother has heritable breast cancer, her risk of inheriting the gene is 50%, which would subject her to a life-time increased risk of breast or ovarian cancer.191 Congress, therefore, opted for a broader definition that included family history
however, Not all family history—is indicative of a genetic risk. How is such a line to be drawn if we do not fully understand the extent of the role of genetics with respect to the majority of diseases? .

如果雇员的父亲患有亨廷顿氏症,该雇员将有50%的风险患亨廷顿氏症。如果女雇员的母亲患有遗传性乳腺癌,那么她遗传该基因的风险为50%,她患卵巢癌的风险也会增加。因此,国会选择了将家族病史归为遗传信息。
然而,并不是所有的家族病史都有遗传风险。以目前的技术条件,我们不完全了解遗传在大多数疾病中的作用,那么该如何划定这条线,仍然需要补充和解释。

the last in the line of cases broadly construing genetic information, is quite different, factually speaking, from the other cases. It is also the most notorious, described in the press as the ‘devious defecator’ case.145 The case originated with a ‘mystery employee’ who ‘habitually’ defecated in one of the warehouses of Atlas Logistics Group Retail Services (‘Atlas’).146 In an attempt to identify the offender, Atlas requested that some of its employees, including plaintiffs Jack Lowe and Dennis Reynolds, submit to a cheek swab for forensic DNA analysis to compare their DNA with that of the ‘offending fecal matter’. Neither was found to be a match. 147 Both, however, filed charges of discrimination with the EEOC alleging that their employer had violated GINA in requesting and requiring them to provide, and in disclosing, their genetic information.148 While the EEOC dismissed the charges, the federal district court found that Atlas had violated GINA.The case turned on whether ‘genetic information’ applied to the results of the forensic DNA analysis of Lowe and Reynolds.

最后一个案件与其他案件有很大的不同。这也是最“声名远播”的案件,被媒体称为“狡猾的逃脱者”案件。这起案件源于一名“神秘员工”,他“习惯”在阿特拉斯物流集团的一个仓库排便。为了确认罪犯的身份,阿特拉斯物流集团要求其部分员工,包括原告杰克·洛和丹尼斯·雷诺兹,提交口腔拭子进行法医DNA分析,以将他们的DNA与“违法粪便”的DNA进行比较。但结果都不匹配。
然而,杰克·洛和丹尼斯·雷诺兹两人都向平等就业机会委员会提出了歧视指控,声称他们的雇主在询问和要求她们提供基因信息方面,违反了《基因信息反歧视法案》的规定。平等就业机会委员会驳回了指控,但联邦地区法院发现阿特拉斯物流集团侵犯了《基因信息反歧视法案》。
案件的焦点是《基因信息反歧视法案》是否适用于洛和雷诺兹的法医DNA分析结果。

According to the above-lixed order, the employer claimed that the DNA analysis was not covered by GINA because it did not reveal the employees' propensity for disease.
but this sounds like a pretty stupid argument. GINA prohibits "genetic testing" and specifically defines "genetic testing" to include "analysis of human DNA." 42 U.S.C. § 2000ff(7).
GINA is still pretty new, so we're trying to figure out how to value these claims. How much should employers compensate an employee for unlawfully analyzing his DNA? Apparently, the jury in this case valued it at $2.25 million.

阿特拉斯物流集团声称DNA分析不在《基因信息反歧视法案》的管辖范围内,因为它没有分析员工的患病倾向。
但这听起来像是一个相当愚蠢的论点。《基因信息反歧视法案》明确禁止对员工进行任何形式的“基因测试”,并明确定义“基因测试”包括“对人类DNA的分析”。
《基因信息反歧视法案》还是个新生法案,所以在雇主的赔偿问题上,尚没有明确标准,但在这个案子中,很显然,陪审团对此案的估价为225万美元,所以阿特拉斯物流集团要为所有受检测的员工总计支付225万美元的赔偿。

CONCLUSION
As we have seen, GINA, like most legislation, is an imperfect statute. It represents compromises and trade-offs that arise when the underlying motivations are as varied and complex as the many actors who pushed for its enactment for 13 years.
But we exist in an imperfect world, where compromises and decisions must be made in the attempt to achieve certain obxtives. Whether GINA was actually necessary to prevent potential future genetic discrimination is hard to determine. Whether it has achieved its practical goal of decreasing the public's fear of discrimination in order to motivate people to pursue genetic testing in clinical care and genomics research is even more uncertain.207 But this is the legislation we have, for better or worse.

正如我们已经看到的,《基因信息反歧视法案》和大多数立法一样,是一部不完美的法规。13年来,推动该法案颁布的参与者有着各种各样复杂的动机,它代表着权衡和妥协。
但我们生活在一个不完美的世界里,为了实现某些目标,必须做出妥协。
很难确定《基因信息反歧视法案》是否真的能防止未来潜在的基因歧视。它是否实现了预期目标,即减少公众对基因歧视的恐惧,以激励人们在临床治疗和基因组研究中进行基因测试,这一点目前仍不确定。但无论是好是坏,我们至少有一个开始。