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Workplace Privacy and Discrimination Issues Related to Genetic Data

Posted on: Sunday, 2 April 2006, 06:00 CDT

By King, Nancy J; Pillay, Sukanya; Lasprogata, Gail A

I. INTRODUCTION

Imagine you are applying for a clerical job in a laboratory.1 The laboratory offers you a job on the condition that you successfully pass a medical examination before starting work. You accept the offer and report to the clinic selected by your new employer for the medical examination. You are asked to complete a medical questionnaire pertaining to your medical history. You answer the questions, including whether you have ever had any of sixty-one listed medical conditions. One of these conditions happens to be sickle cell anemia.2 You also provide urine and blood samples during the medical examination, although you do not ask, and are not told, what medical tests may be conducted on the samples. One of the tests your new employer required the clinic to conduct was a genetic test for sickle cell trait.3 You receive health approval for the job, but are not told that genetic tests were conducted as part of your medical examination. You also are not provided with the test results. By the way, only African American applicants for the job were tested for sickle cell trait, as it is known that this genetic trait is much more prevalent in African Americans.

Now assume you start working in your new clerical job in the laboratory.4 Months pass and you file a disability claim for a work- related injury in the form of carpal tunnel syndrome. Carpal tunnel syndrome is believed to be caused or exacerbated by repetitive hand or wrist motions.6 You assume that your condition was caused by long hours of typing at work on a computer keyboard. Your employer requires you to undergo a physical examination by the company doctor to determine if your condition is work-related. As part of the medical examination, you provide a blood sample. Again you are not told what tests will be performed on the blood sample, but you learn that your blood was tested to determine if you have a genetic condition that involves a deletion on chromosome seventeen. One of your employer's managers requested the genetic test under the mistaken belief that this test would reveal if your genes, rather than the work, caused your carpal tunnel syndrome. You learn about your employer's genetic testing practices from another employee who, during a physical examination related to his disability claim for carpal tunnel syndrome, asked the examining doctor why he was being tested and learned the genetic nature of the test.

Should your new employer have the right to require you to provide genetic information as part of your medical history and to conduct genetic testing as part of a preplacement physical examination or a physical examination related to a work-related disability claim? Should you have the right to be told that genetic tests will be conducted as part of these workplace medical examinations? Do you want to know the results of genetic tests conducted by doctors on behalf of your employer? What are the parameters of permissible uses for genetic information by employers? Should you have legally protected workplace privacy interests in your genetic information? Should some uses of genetic information by your employer be prohibited as unlawful workplace discrimination?

In this article we will address important questions such as these in the context of a comparative law study of genetic workplace privacy and nondiscrimination in the European Union (EU) and the United States. Advocates of personal data protection and workplace privacy in Europe have reason to be optimistic these days. Broad privacy protections for personal information are now in place throughout the EU.7 All fifteen countries that were EU members prior to the recent enlargement of the EU8 have enacted legislation to implement the personal data protections mandated by the EU's Privacy Directive.9 This top-down approach, setting basic privacy protections at the EU level through directives that are then adopted through the mechanism of consistent national privacy laws, guarantees basic privacy rights to all EU residents regarding the processing of their personal information.10 Momentum is also building for a second round of privacy legislation to further enhance privacy protections for EU residents and to address related discrimination concerns.11 This second round of privacy legislation will likely address the need for expanded privacy protections in specific sectors of the economy, including the employment sector, and will provide additional protections for sensitive personal information such as genetic data.12 Continued advances in biotechnology and information technology are making genetic information more useful and less expensive as well as easier to access and disclose.13 It is also likely that new legislation at the EU level and in the Member States will severely restrict employers' processing of genetic data about employees and prohibit employers from discriminating against applicants and employees on the basis of genetic information.14

Given the global nature of commerce and associated challenges for multinational companies, the time is ripe for new comparative law studies examining workplace privacy and nondiscrimination protections related to genetic information. It is true from a broad privacy rights perspective that U.S. privacy laws, including those applicable to the workplace, have failed to keep pace with the evolution of basic privacy protections enjoyed by people living in the EU.15 Although privacy protections in the U.S. are found in multiple state and federal laws, including constitutions, statutes, common law case opinions, administrative laws, and even executive orders, this body of law does not provide broad privacy and data protection rights for Americans similar to those found in the EU.16 However, in the area of privacy and nondiscrimination laws related to genetic information and testing, the U.S. system is poised to provide substantial, if not superior, privacy and nondiscrimination protections for people in the United States.17 As we explain in this article, this is true because the U.S. practice of enacting targeted federal civil rights statutes facilitates adoption of legislation to adequately address privacy and nondiscrimination concerns about genetic information and the workplace.

The U.S. legislative approach for workplace regulation will enable Congress to focus on the workplace and health insurance sectors of the economy where significant privacy and discrimination risks abound. Some relevant federal regulation of the workplace and health insurance markets is already in place and may be supplemented by specific privacy and nondiscrimination protections for genetic information. For example, the Americans with Disabilities Act (ADA) provides significant privacy and nondiscrimination protections for people with disabilities in the employment sector.18 Likewise, the Health Insurance Portability and Accountability Act (HIPAA) regulates patients' medical privacy in the health care sector.19 Legislation has been introduced in Congress to regulate genetic information in the employment and insurance sectors.20 In February 2005 the Senate passed the Genetic Information Nondiscrimination Act (S. 306).21 H.R. 1227 was introduced in the House in March 2005 and is currently being discussed in committees.22

Efforts to enact federal legislation regulating the processing of genetic information have been made over the last eight years, but to date, have not passed.23 For example, a bill nearly identical to a previous draft of similar legislation to regulate genetic information was introduced in Congress in 2003.24 The proposed Genetic Information Nondiscrimination Act of 2003 passed the Senate unanimously and President Bush supported the legislation.25 However, this legislation died in the House without a vote, prompting questions about whether Congress would ever enact legislation regulating genetic information. The stage is set for new action by Congress on genetic privacy and nondiscrimination in 2006 now that S. 306 has passed the Senate and H.R. 1227 is pending in the House.

In this article we will provide a comparative analysis of EU and U.S. laws concerning workplace privacy and nondiscrimination related to genetic information. The article begins with an overview of genetic information and genetic testing, framing the issues of genetic privacy and nondiscrimination within the larger context of important progress in biotechnology and information technology. The article then provides an overview of pertinent international law and lays a foundation for workplace privacy and equality with respect to genetic information. Next the article explores privacy and data protection in the United States, including existing protections for workplace privacy, existing prohibitions on employment discrimination based on genetic information, and proposed federal legislation. The article then provides an analysis of workplace privacy and data protection in the EU, including specific protections related to genetic information and genetic testing.

The final section of the article offers a comparative a\nalysis of the U.S. and EU approaches to protecting employees' privacy and prohibiting discrimination based on genetic information. This section explains why both privacy and nondiscrimination are essential policy goals for legislation relating to genetic information and why effective legislation needs to address both goals simultaneously. We identify several features of the EU vision for protecting genetic information that are constructive to consider as federal legislation develops in the United States. We conclude that the federal legislation pending in the U.S. Congress should be adopted, but offer suggestions for amendments to enhance genetic privacy and nondiscrimination protections for job applicants and employees in the United States. These suggestions draw on insights from studying the European approach to workplace privacy and nondiscrimination. However, we reject the position advocated by the EU's Article 29 Working Party that "all processing of genetic data in the field of employment should be prohibited in principle,"27 finding this position is both unworkable and undesirable for workplaces in the United States. The approach of the Article 29 Working Party would preclude beneficial uses of genetic data and genetic testing in the workplace, such as for prevention of occupational exposures that may trigger illnesses in persons with certain genetic predispositions.28 As long as strong antidiscrimination provisions with tough enforcement are available in cases where employers misuse genetic information, which we argue the proposed legislation in the United States would provide, an absolute ban on the processing of genetic data and genetic testing is not necessary in the United States. Our suggestions for improvements to the proposed legislation are essential and would enhance already strong antidiscrimination provisions by adding equally strong data privacy protections. This approach is consistent with unique strengths found in the U.S. system of workplace regulation that seeks to protect employees from unfair employment discrimination while also favoring targeted and pragmatic solutions that do not unduly interfere with employers' prerogatives to manage the workplace.

II. ADVANCES IN BIOTECHNOLOGY AND INFORMATION TECHNOLOGY PRESENT POLICY CHALLENGES FOR REGULATION OF GENETIC INFORMATION AND TESTING

How is the Human Genome Project related to fair treatment in the workplace? According to the recent congressional testimony of Dr. Hudson, Director of the Genetics and Public Policy Center, the Human Genome Project and related advances in biotechnology are raising important policy concerns about the use of genetic information by employers and others:

[The year 2003] marked the completion of the human genome project, an historic international project to decipher, letter by DNA letter, the sequence of all the human genes. I believe that the mapping and sequencing of the human genome is the "moon landing" of the current generation. It is an accomplishment that is stunning in its own right. It also serves as the centerpiece of a wide array of breathtaking breakthroughs in genetics research that have provided new insight into human health and disease. Now these advances are beginning to change the practice of medicine in ways that are at once exciting and challenging. Today I am pleased to discuss the rapid advances in genetic testing and the importance of public policies that will keep pace with the science and will ensure that genetic information is used for benefit and not for harm.29

This generation's "moon landing" has impacted our workplaces in ways that were likely not even imagined at the start of the Human Genome Project.30 This has prompted legal scholars and policy makers in Europe and the United States to study the social implications and regulatory challenges raised by scientific advances in genetic research.31 These studies often focus on the need for new laws to protect employee privacy and prevent workplace discrimination related to genetic information.32 The literature provides rich background for discussion of genetic privacy and nondiscrimination and provides insights into the answers to important questions: What is genetic information? What is genetic testing? How is genetic information obtained by employers? What is privacy and what privacy interests should applicants and employees have in genetic information about themselves or their families? What is genetic workplace discrimination? How can genetic information be used for good and not for harm with respect to employment decisions and workplace management?

First, what is genetic information? Unlike conventional medical information about an individual, genetic information is a broad term that includes information about an individual as well as the individual's biological family.33 Broadly speaking, information with genetic significance includes the results of tests of genetic material, the results of nongenetic medical tests revealing genetic information, and family medical history.34 Defining genetic information for purposes of regulating genetic privacy and discrimination in the workforce is a challenge.35 If defined too broadly, genetic information includes all medical information about the individual and his or her family, losing its genetic focus.36 However, if defined too narrowly it excludes information that rightly should be protected as private and not available for employers' use.37 The question of what is an appropriate definition of genetic information will be explored more fully in the discussion of proposed federal legislation in the United States and the evolving vision of protections for genetic privacy in the EU.38 However, by way of introduction, one state statute defines genetic information as "any written, recorded individually identifiable result of a genetic test ... or explanation of such a result or family history pertaining to the presence, absence, variation, alteration, or modification of a human gene or genes."39

Genetic information also includes information about an individual and the individual's family members that may be sensitive, but is not necessarily medical or health-related.40 For example, DNA-based genetic tests may reveal genetic information about an individual's biological ancestors or descendants, such as information that confirms or denies parentage or membership in an ethnic group.41 Also, genetic information may confirm information that is generally obvious about a person, such as the individual's gender, the colors of the individual's skin or eyes, and so on.42

Next, what is genetic testing? "Genetic testing involves the analysis of chromosomes, genes and/or gene products to determine whether a mutation is present that is causing or will cause a certain disease or condition."43 Genetic tests can reveal three different categories of human conditions:

The first condition is a "disease or defect that is directly attributable to a genetic defect." This condition means that a person tested either has the disease or will develop the disease in the future. The second condition reveals whether a person is a carrier of a particular disease or genetic defect. It is important to note that someone who is a carrier will never develop the disease. Finally, the third condition is a predisposition to developing the disease. Under the third condition, the individual is "asymptomatic" and may never develop the disease, but the person is susceptible to developing the disease.44

In the workplace context, genetic testing can be implemented in two basic forms: screening and monitoring.45 Genetic screening involves predictive genetic examinations or the examination of an individual's genetic code in order to determine if that individual may be prone to disease or even to certain behaviors such as laziness, violence, depression, alcoholism, and so on.46 What is sometimes misunderstood, however, is that most of human behavior and disease are not the result of a single mutation or gene, but instead "the culmination of lifelong interactions between our genome and the environment."47 In most cases current scientific knowledge does not provide a clear link between an individual's genetic sequence and that person's likelihood of developing disease or undesirable personality traits.48 Therefore any conclusions regarding the longevity and quality of an employee's tenure based on analysis of genetic data in this regard may be speculative at best.

Unlike genetic screening, genetic monitoring is potentially useful to the person monitored. It involves testing over time to assess if an individual's genetic structure has been altered or damaged due to exposure to certain risks.49 In the employment context this might involve monitoring employees to determine if their exposure to a hazardous environment (due to chemical or other toxin exposure) is adversely affecting their health, and whether a change of position should be made as a result.50 This is a legitimate use of genetic testing because the objective of monitoring is the prevention, detection, and response to occupational disease. However, there is still a danger to employees that without appropriate legal safeguards employers will use these and genetic screening tests to discriminate against employees.

Looking more closely at the distinction between screening and monitoring, a genetic screen is a one-time test "to determine whether an employee or an applicant has a genetic condition that would predispose him or her to developing a particular disease or a genetic defect that could be transmitted to offspring."51 For example, alpha-1-antitrypsin deficiency is a genetic condition that could be detected by a genetic screen and indicates genetic predisposition toward some lung diseases.52 As such, alpha-1- antitrypsin deficiency is a genetic trait that appears to be relevant to some job placement decisions, such as placement in jobs involvi\ng occupational exposures in the form of coal dust, asbestos, or even cigarette smoke that may lead to, or exacerbate, lung diseases.53 A genetic screen allows employers to identify individuals who are "hypersusceptible" to occupational illnesses or to identify employees who are predisposed to nonoccupational diseases.54 In contrast, genetic monitoring is generally used for a group of employees rather than an individual applicant or employee.55 Genetic monitoring focuses on monitoring employees to determine if occupational exposure to hazardous agents has caused chromosomal or genetic damage, as opposed to whether an individual possesses a particular genetic trait.56 For example, an employer could study tumor cells from employees who have developed tumors to determine if genetic defects are present in the tumor cells.57 Such monitoring could provide relevant information about occupational exposures and risks of contracting disease when there are known or likely environmental causes of tumors.58

Currently there are over 1000 genetic tests available or in development.59 These tests range from tests for fatal and untreatable diseases, such as Tay Sachs disease, to tests for gene mutations that increase the risk of developing a disease at some point in the future, such as the BRCA1 and BRCA2 mutations that are associated with an increased risk of breast and ovarian cancer.60 However, the availability of genetic testing has outpaced development of effective treatments of genetic diseases:

The information to be gained from genetic testing is incredibly powerful and can lead to life altering decisions that improve health and the quality of life. But it is important to remember that our ability to detect gene misspellings precedes, sometimes by decades, the development of effective prevention and treatment. For example, we have had a genetic test for Huntington disease for over a decade but still have no effective intervention.61

Further, the medical community and the literature recognize significant limitations on the use of genetic testing to predict that an asymptomatic individual with a genetic trait or mutation will develop an associated condition or disease.62 An individual's genetic profile has been characterized as a "future diary" that has come to be seen as holding everything that an individual is or will become.63 However, at best the diary is probabilistic; it does not take into account environmental factors that may be more determinative than genetic factors.64 Use of a person's genetic profile to predict his or her future health is limited due to the uncertainty of disease manifestation: some genetic diseases are complex and genetic tests do not predict the severity of the disease.65 Other genetic diseases are multifactorial, requiring the interplay of multiple genes and/or environmental factors before the disease will manifest.66 Genetic test results may be misinterpreted by medical personnel due to reasons such as lack of training and shortage of personnel.67 Additionally, the testing technology has limitations. For example, some genetic tests do not give accurate test results because the tests may produce too many false positives or fail to detect the genetic trait being tested.68 Beyond the limitations of using genetic information to predict the future health of individuals is the realization that most employers and other public and private bodies are not in a position to fairly use and interpret genetic information because they lack specific knowledge and professional training.69 Consequently, in order to use genetic information appropriately in employment decisions when genetic information is relevant to employment decisions, employers must rely on the expertise and advice of medical professionals who are qualified and entitled to carry out genetic tests and/or to interpret genetic information.70

How do employers obtain genetic information? There are four primary ways for employers to obtain genetic information about an individual applicant or employee: (1) perform a genetic test related to the individual; (2) require an individual to release his or her medical records or provide medical history that contain genetic information; (3) use genetic information that is otherwise available about the individual, such as genetic information available in computerized databases that store health records about the individual or health insurance claim forms; and (4) use genetic information that is otherwise available related to the individual's biological family, such as records about the prevalence of genetic diseases in the individual's family. 1 The use of genetic testing as part of routine physical examinations is becoming increasingly likely as the cost decreases and more genetic tests become available.72

What is privacy and what privacy concerns are related to workplace use of genetic information about applicants or employees? Privacy scholars have identified several privacy-related interests of employees and applicants in this context. The European perspective, and arguably the international perspective, begins with recognizing the right to privacy as a fundamental human right that is "solidly embedded in international human rights law as well as in national constitutions, legislation and jurisprudence."73 In Europe, privacy rights related to genetic information and testing build on the concept of individual freedom to "act in accordance with their own feelings, will and personality."74 The zone of individual privacy can be divided into physical and informational zones of privacy.75 The physical zone involves respect for a person's physical integrity, home, and correspondence.76 Informational privacy protects against the unauthorized collection, storage, use, and disclosure of personal information.77 The EU Privacy Directive and privacy legislation adopted in the Member States consistent with the Directive protect individual privacy. 8 It is clear that employees in workplaces in Europe have rights to privacy.79

In contrast, outside the context of constitutional privacy rights of individuals with respect to government intrusions,80 individual privacy rights in the United States are not based on a concept of fundamental rights. American notions of privacy are reflected in the concept of "rugged individualism." Individual autonomy and liberty are revered, as is apparent in the jurisprudence of decisional privacy.82 However, the right to privacy in private workplaces is treated as akin to personal property.83 As such, it may be bargained with and exchanged for other rights and privileges, including those obtained in an employment relationship.84 In other words, because privacy belongs to the individual, it may be traded away by the individual in exchange for something of commensurate value, such as a job. Compared to employees in the EU, it is much less clear that U.S. employees have any significant privacy rights in private- sector workplaces.

U.S. law in this area stands apart from most of the world, which starts instead from the position that the right to privacy is a central tenet of human dignity.85 Human dignity means "being accorded the respect and status appropriate to a human being, being treated in a way that allows or enables one to live a becoming existence."86 Unlike proprietary privacy rights, human dignity is not generated by the individual, but is instead created by one's community and bestowed upon the individual.87 It cannot therefore be bartered away or exchanged under traditional notions of atwill employment and contract law as seen in U.S. law.88

In the specific context of genetic information and testing, the privacy rights of individuals are said to include individual rights of autonomy and confidentiality related to sensitive information. For example, individual autonomy, or the individual's freedom to make his or her own decisions without external control, is a privacy concern that arises with respect to whether an individual wants to undergo genetic testing.89 Included in autonomy is the right to be provided with reasonable information about the genetic tests to be administered and the right to make a voluntary decision whether to undergo the tests.90 There also may be a privacy right "not to know" the test results, particularly if medical science offers no beneficial treatment for a person who has a risk of developing a genetic disease in the future.91 Because genetic information may be sensitive and access to that information is a privacy concern, individuals also may be concerned with the confidentiality of information produced by genetic testing.92 The privacy concerns about confidentiality of genetic information have been characterized as "informational privacy."93

What is genetic workplace discrimination? Genetic discrimination can be defined as the discrimination that is directed toward an individual or a member of an individual's family solely on the basis of that individual's genotype.94 Advances in genetic science, including the science of genetic testing, provide opportunities for employers to use genetic information either for "good or for harm" with respect to workplace management.95 Broadly speaking, unfair discrimination related to an individual's genotype is certainly a use for harm.96 Potential uses of genetic information and genetic testing for "good" include protecting the health and safety of employees on the job.97 More controversial is whether employers should be permitted to use genetic information to minimize employer costs and liabilities associated with hiring employees who are unfit for the job.98 Potential cost minimization advantages for employers may relate to liability under occupational safety and health laws, workers' compensation laws, as well as tort liability for injuries to third persons by employees under negligent hiring, retention, or entrustment theories.99 Potentially harmful uses of genetic informati\on and genetic testing in the workplace may lead to "alarming consequences" such as: creation of a genetic underclass, the violation of individual privacy rights, decreases in safety in the workplace, and the use of genetic discrimination as a pretext for other forms of discrimination.100

When discussing the need for prohibitions of workplace discrimination based on genetic information and testing, one threshold issue is whether to limit the analysis to concerns about protecting individuals who are asymptomatic for genetic disease: "The quintessential feature of genetic discrimination is the use of genetic information about an asymptomatic person. If the disorder related to a genetic characteristic has occurred, discrimination based on the disorder may be unfair but is not customarily considered 'genetic discrimination.' "101 On the other hand, laws protecting persons with disabilities may prohibit discrimination against some people with genetic disorders by treating genetic disorders as forms of disability.102 The scope of our discussion in this article of workplace discrimination laws and genetic discrimination will be limited to protection for applicants and employees who are asymptomatic for genetic disease. In this context the article will discuss the protections afforded asymptomatic persons by federal laws, such as the ADA, but also have broader application to other disabled persons such as those with diagnosed genetic disorders.

III. OVERVIEW OF PRIVACY AND EQUALITY PRINCIPLES RELATED TO GENETIC PRIVACY AND NONDISCRIMINATION FROM APPLICABLE INTERNATIONAL LAW

So far in this article, we have focused on genetic privacy issues in the United States and in the EU. However, genetic privacy in the workplace triggers the application of universal human rights standards that transcend national or regional state boundaries. Indeed, as is explained in the sections below, the rights in issue are not conferred upon individuals by States, but rather are considered to inhere in every individual by virtue of their humanity. The question then turns to the obligation of States to respect those fundamental human rights and ensure as far as possible that private actors, such as employers, also respect those rights.

A. Foundational Concepts of Privacy, Equality, and Nondiscrimination from International Human Rights Law

The rights to privacy, equality, and nondiscrimination are protected by international human rights law and are germane to any discussion of protecting genetic information. Protecting human dignity is the central tenet of the international human rights framework. Following the atrocities of World War II, the international community drafted the United Nations Charter (U.N. Charter), which enshrines the notion of human dignity,103 followed in 1948 by the Universal Declaration of Human Rights (UDHR), which states in its preamble that:

Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world... . Whereas the peoples of the United Nations have in the Charter reaffirmed their faith in fundamental human rights, in the dignity and worth of the human person and in the equal rights of men and women and have determined to promote social progress and better standards of life in larger freedom;104

and enshrines in Article 1 the concept of human dignity and equality: "All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood;"105 and the rights to equality and nondiscrimination in Article 2: "Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, color, sex, language, religion, political or other opinion, national or social origin, property, birth or other status .. .;106 and in Article 7: "All are equal before the law and are entided without any discrimination to equal protection of the law. All are entitled to equal protection against any discrimination in violation of this Declaration and against any incitement to such discrimination."107

In addition to the protection of these rights in the UDHR, the rights are also protected in the two international covenants: the International Covenant on Civil and Political Rights (ICCPR);108 and the International Covenant on Economic, Social, and Cultural Rights.109 Both of these covenants recognize that the rights to privacy, equality, and nondiscrimination "derive from the inherent dignity of the human person."110 Together these three instruments form the International Bill of Rights.

Genetic data is obtained from human beings and inherently necessitates an invasion (consensual or not) into the human body to obtain this information and the possibility that this information may be used to affect an individual's enjoyment of other rights. In other words, the rights to privacy (in terms of obtaining the information, consent, and use of the information, including the right of an individual not to know the results) and the rights to equality and nondiscrimination (inequality and discrimination may result from how the genetic data is used) are triggered.

The rights to privacy, equality, and nondiscrimination have evolved over the years to enable an encompassing approach to genetic privacy issues. While the concept of human dignity informs any discussion of human rights, it is important to note that international human rights law exists to ensure the promotion and protection of distinct legal rights (i.e., rights to privacy, equality, and nondiscrimination)-in some cases without derogation.

1. Privacy

Privacy rights are guaranteed in international human rights law111 and in regional instruments.112 The understanding of what is entailed in the right to privacy has evolved over the years to include not only privacy rights in one's own home or to one's own correspondence, for example, but to broadly encompass the right to control one's life to the extent that one is free from physical intrusion and has control over one's personal information including health or genetic information.113 In this regard Article 17 of the ICCPR imposes an obligation on States to ensure that this right is protected and afforded to individuals by the State as well as by private citizens.114 The Human Rights Committee has also reaffirmed the positive obligation on States to ensure that Article 17 rights in the ICCPR are "guaranteed against all such interferences and attacks whether they emanate from State authorities or from natural or legal persons," and therefore States must "adopt legislative and other measures to give effect to the prohibition against such interferences and attacks as well as to the protection of this right."115 European jurisprudence on privacy relating to health information116 clearly sets out the individual's right to consent to the obtaining and use of the information, which is of course relevant to the discussion of genetic information. The European Convention also sets out positive obligations on the States to respect the privacy and family life rights contained in Article 8.117

2. Equality and Nondiscrimination

The rights to equality and nondiscrimination are intertwined and anchor the framework of international human rights law.118 In essence, these rights ensure that all human beings are afforded universal human rights equally and without discrimination on enumerated grounds, and are afforded equal protection under the law without discrimination. The use of the phrase "any other grounds" in antidiscrimination rights guarantees has been interpreted to mean that the list is not exhaustive. These grounds also reveal, though, that in some cases discrimination with a clear and cogent reason will be permitted. For example, denial of the right to vote to minors is not viewed as discrimination.119

Finally, it is also worth noting that the International Labour Convention (ILO) No. 111 Concerning Discrimination in Respect of Employment and Occupation,120 which proscribes any discrimination in the workplace, would of course be relevant to any use of genetic information to discriminate in the workplace.

B. International Efforts to Regulate Privacy and Nondiscrimination of Genetic Information

The international community has also recognized the need to regulate the use of genetic information, specifically to protect the rights to privacy, equality, and nondiscrimination. In 1997, the United Nations Educational, Scientific, and Cultural Organization (UNESCO)121 passed the Universal Declaration on the Human Genome and Human Rights (UNESCO Declaration). Article 6 of the UNESCO Declaration provides: "No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity."122 Other rights protected in the UNESCO Declaration123 include the need for informed consent,124 the right of an individual to know about the results of genetic testing,125 and the right to confidentiality of genetic information.126

The UNESCO International Declaration on Human Genetic Data12 provides additional principles128 to guide the collection and use of genetic information.129 Article 14 sets out the right of an individual to privacy and confidentiality.130

In addition to these, UNESCO131 has also established the International Bioethics Committee132 and the Intergovernmental Bioethics Committee,133 which work together to focus on the legal and ethical issues related to life sciences, and in particular, to disseminate the principles and flesh out the issues deriving from the principles contained in the Universal Declaration on the Human Genome and Human Rights.

In February 2005, the International Bioethics Committee completed its Preliminary Draft on Universal Norms onBioethics (Draft Universal Norms).134 The Explanatory Memorandum for the Draft Universal Norms (Explanatory Memorandum) is particularly helpful in providing insight into those issues noted as important by the framers. Article 4 of the memorandum, entitled Human Rights and Dignity, hails the importance of protecting rights and respecting human dignity in the collection of genetic information.135 Article 6(136) refers to the protection of equality rights and Article 8(137) to nondiscrimination and nonstigmatization. Article 9 refers to personal autonomy and individual responsibility, a hallmark of human dignity, which "is directly derived from binding international human rights law."138

The Explanatory Memorandum, while not binding in any manner, encapsulates the current international thinking on genetic information and international human rights including privacy, equality, and nondiscrimination. It is encouraging in that the framers clearly see that international human rights law protections afforded to individuals must be implemented. The Explanatory Memorandum reaffirms that international human rights law provides specific rights that must be protected. These rights should not be obfuscated in discussions of human dignity, but rather, should be recognized as legally enforceable rights that operate holistically and include in their guarantees the respect for human dignity. Otherwise, there is a danger that the infringement of rights might occur while lip service is paid to human dignity.139

C. EU Regional Efforts to Regulate Privacy and Nondiscrimination of Genetic Information

At the regional level, the most important instrument is the European Convention on Human Rights and Biomedicine (EU Convention), passed in 1997 by the Council of Europe to legislatively proscribe genetic discrimination. 140 Article 1 of the EU Convention specifically upholds human dignity and human rights without discrimination:

Article 1-Purpose and Object

Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine. Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.

Unlike the UNESCO and ILO instruments,141 the EU Convention "is the first legally binding international text designed to preserve human dignity, rights and freedoms through a series of principles and prohibitions against the misuse of biological and medical advances."142 The EU Convention proscribes any form of discrimination against individuals on the grounds of their genetic inheritance and recognizes the need to respect the uniqueness and diversity of every individual.143 An EU Presidency Statement from 2001 encapsulates the EU's approach to genetic information and protecting the rights of individuals:

Genetic discrimination warrants special consideration because it comes at the intersection between two basic human rights: the right to privacy and the right to protection from any form of discrimination. One major ethical issue concerns respect for confidentiality and privacy, since genetic testing reveals the most intimate details of a human being's physical and even psychological determinants. What is more, the information does not only affect that individual, but also involves members of the person's nuclear or extended family (relatives), as well as future generations. The European Union is also very much aware of the risks of "preventive discrimination," particularly in matters of health, insurability and employability, as now made possible by scientific and technological progress. Genetic testing is currently confined to screening for certain diseases such as breast and colon cancer, or diabetes, but is set to become increasingly common and so a lead needs to be given before unacceptable practices become established.144

In sum, international human rights law creates binding obligations upon States which have ratified treaties.145 Accordingly, where the United States or EU Member States have ratified the relevant international law treaties, they are obligated to ensure that the treaties are implemented in their domestic laws.146 Unlike positive law approaches typically found in domestic legal frameworks that use legitimate coercion, international human rights laws seek to change norms and values through a constructive approach.147 The discussion of workplace genetic privacy invokes the international human rights law guarantees of privacy, equality, and nondiscrimination. Any domestic or regional efforts to regulate this matter would therefore benefit from: (a) ensuring compliance with binding international law obligations and (b) reaping the wealth of interpretation on these rights that has evolved over the years. Given the nature of employment in the globalized world, transborder employment is common. An internationalized approach to workplace genetic privacy and nondiscrimination would significantly further international harmonization and would ensure the implementation of fundamental international human rights.

IV. THE UNIQUE U.S. APPROACH TO GENETIC PRIVACY AND NONDISCRIMINATION IN THE WORKPLACE

Relatively speaking, U.S. employees in the private sector have minimal privacy protections for personal information gathered by their employers, including genetic information and other medical or health-related personal information.148 In this section we examine U.S. privacy protections for employees in private-sector workplaces with a focus on federal legislation.149 We also examine proposed federal legislation passed by the Senate and pending in the House to protect employees' privacy in their genetic information, restrict genetic testing in the workplace, and prohibit employment discrimination related to genetic information.

A. Overview of U.S. Privacy Laws

Unlike the EU Privacy Directive, U.S. law does not create a broad right to informational privacy that protects employees' personal information from prying by employers or regulates unfair use of employees' personal information in employment decisions.150 Broad privacy theories found in U.S. tort law do apply to the workplace.151 However, no reported court opinions have directly addressed the potential tort liability of employers related to privacy issues involving employees' genetic information in private- sector workplaces.152

A few reported privacy tort cases involving sensitive medical information give us insight into how courts may resolve privacy issues related to genetic information in the context of private- sector workplaces. For example, a court in a privacy tort case found individuals have privacy interests in sensitive personal information about themselves that can be obtained by others through medical tests. In Doe v. High-Tech Institute, Inc., High-Tech Institute obtained consent from one of its students to test his blood for rubella, but then the school performed an additional test without the student's consent to confirm that the student had the human immunodeficiency virus (HIV).153 After obtaining the student's test results, High-Tech Institute disclosed the student's HIV-positive status to a government department of health.154 The Colorado Court of Appeals held the student had two separate causes of action against High-Tech that were grounded in privacy tort law. First, he had a cause of action for unreasonable intrusion into his seclusion based on allegations that High-Tech conducted unauthorized medical tests on his bodily fluids.155 Second, he had a cause of action for impermissible public disclosure of private facts based on allegations that High-Tech disclosed his HIV test results to a government agency.156 Because these two torts are separate infringements of an individual's privacy rights, Doe held the student had two separate causes of action in tort against High-Tech Institute.157

A second case arising in the public employment context provides insight into privacy claims related to genetic testing and other medical tests for sensitive personal information. In Norman- Bloodsaw v. Lawrence Berkeley Laboratory, the Ninth Circuit held that a person has a constitutional right of privacy in his or her genetic information and other sensitive personal information that restricts unauthorized testing of bodily fluids for employment purposes.158 Because this case involved testing of government employees, constitutional privacy rights were involved as opposed to common law tort liability.159 The Ninth Circuit analyzed the sensitive nature of genetic and other personal medical information revealed through the employer's tests of employees' blood and urine for pregnancy, sickle-cell trait, and syphilis.160 The court noted that genetic tests for sickle cell trait may reveal sensitive information about family history and implications for reproductive decision making; likewise medical tests for pregnancy and syphilis also may reveal sensitive information about one's sexual history.161 The Ninth Circuit held giving one's consent "to a general medical examination does not abolish one's privacy right not to be tested for intimate, personal matters involving one's healthnor does consenting to giving blood or urine samples, or filling out a questionnaire."162

In the health care industry, a general duty of a health care provider to preserve medical confidences exists under tort law that provides privacy protection for unauthorized disclosures of medical records including genetic information.163 However, the duty to preserve confidences does not arise unless a special confidential relationship exists between the person conducting the tests and the person tested, as between physician and patient, and does not ordinarily apply to employer/employee relationships.164

In short, U.S. privacy law does not recognize a br\oad privacy interest in employees' personal information that would encompass employees' genetic information except in limited circumstances related to specific types of disability-related information that are discussed in the next section.165 Generally speaking, employers may avoid common law tort liability by following reasonable practices with respect to protecting the confidentiality of medical information, obtaining consent before conducting genetic tests, and making sure any collection of genetic information and/or testing is only for job-related purposes. Where an employer complies with ADA and HIPAA regulations before collecting or using medical information about applicants and employees, and follows the medical confidentiality rules contained in these regulations, it should have little difficulty avoiding common law privacy tort liability. For example, with respect to the tort of intrusion into seclusion, employers can generally avoid liability for unreasonable intrusions by reducing employees' expectations of privacy. Privacy expectations can be reduced by disclosing the nature of tests to be conducted and obtaining consent from the person to be tested for the testing. With respect to the tort of unreasonable publication of private facts, compliance with ADA medical confidentiality regulations will likely prevent the type of public disclosure of private medical information that this tort encompasses and thereby minimize employers' liability.

B. Federal Statutes Regulating Genetic Privacy and Discrimination in the Workplace

The primary source of federal law that requires employers to protect the privacy of medical information related to employees is the ADA.166 The ADA applies to all private-sector employers with more than fifteen employees and prohibits disability discrimination by a covered employer with respect to all employment practices and policies.167 The ADA prohibits disability discrimination against applicants and employees who fit within a three-prong definition of disability encompassing those who currently have a disability, those who are regarded by their employer as having a disability, and those who have a medical record of having had a disability.168 The ADA has sig\nificantiy influenced human resources practices by creating minimum standards for medical inquiries, medical examinations, and confidentiality of medical information applicable to all applicants and employees of a covered employer.169 Arguably, employers' compliance with these standards has improved workplace privacy for all employees, even for employees who do not have disabilities as defined by the ADA.

The statutory language of the ADA does not expressly cover genetic information and genetic testing.170 However the Equal Employment Opportunity Commission (EEOC), the federal administrative agency that enforces the ADA, interprets the ADA's disability discrimination protections to apply to the use of genetic information and genetic testing for employment purposes.171 The EEOC has been involved in high-profile enforcement actions related to pre- employment genetic testing, including litigation of ADA claims against the Burlington Northern Santa Fe Railway. Because the ADA applies to all workplace practices and policies, it arguably applies to the employers' use and collection of genetic information that is a form of sensitive medical information.173 However, not all genetic information is medical information-genetic information may instead relate to sensitive characteristics such as gender, race, or parentage.14 Consequently, this discussion of the applicability of the ADA to genetic information is limited to genetic information that is also medical information.

The ADA limits employers' prerogatives related to genetic testing for employment purposes, because most if not all genetic tests will be medical tests covered by the ADAs medical examination rules.175 For example, scientists are continuing to develop new genetic testing applications with the potential to help employers select employees for jobs who are genetically more likely to perform well on the job. In the not too distant future, genetic tests may even help employers scientifically predict a person's personality traits in the employee selection process, replacing current practices related to personality testing of job applicants.177 These genetic tests will likely be covered by the ADA's rules on medical examinations and medical inquiries because medical professionals conduct the tests. To the extent that genetic tests reveal medical information, the ADA's medical confidentiality rules will also apply.

The ADA provides comprehensive privacy protections for applicants and employees related to personal data when that personal information is in the form of medical information.178 In this regard the ADA is similar to the EU Privacy Directive, which protects employee medical information as a form of personal data.179 The ADA does this by requiring employers to treat applicants' and employees' medical information as confidential, including obligations to keep the information secure and not to disclose the information except in very limited circumstances.180 The medical confidentiality rules appear to apply to employers' processing and retention of all employees' medical information-whether or not the employee has a medical condition that constitutes a disability within the meaning of the ADA.181 However, as discussed later in this article, the broad scope of the ADA's medical confidentiality rules does not necessarily mean that it creates enforceable privacy rights for all employees because nondisabled persons have no statutory remedy for violations of the ADA's medical confidentiality rules.182

In addition to limiting the use and retention of medical information, the ADA also limits collection of medical information. It protects the privacy of applicants by preventing the employer from requiring disclosure of medical information or medical examinations from applicants before a certain point in the sequence of the hiring process and enables applicants to keep their medical information private before that point:

[T]he ADA . . . prohibit[s] medical examinations and inquiries until after the employer has made a real job offer to the applicant. [For a job offer to be real] an employer must have either completed all non-medical components of its application process or be able to demonstrate that it could not reasonably have done so before issuing the offer. . . . [T]he ADA . . . deliberately allow[s] job applicants to shield their private medical information until they know that, absent an inability to meet the medical requirements, they will be hired, and that if they are not hired, the true reason for the employer's decision will be transparent.183

The ADA's regulation of the hiring sequence creates different sets of rules for collecting medical information that depend on whether the employer's collection pertains to: (1) an applicant who has not yet received a job offer (pre-offer), (2) an applicant who has received a job offer (post-offer), or (3) an employee who is no longer an applicant (during employment).184

At the pre-offer stage before a job applicant has received an offer of employment, the ADA prohibits medical examinations and prohibits collection of any medical information about the applicant that is a "disability related inquiry."185 This prohibition on medical examinations and collection of medical information about applicants protects applicants' privacy while applicants are being considered for employment and prior to receiving a job offer.186

At the post-offer stage, after an applicant has received a job offer that may be conditioned only upon determination that the applicant is able to perform essential job functions, the employer is free to conduct medical examinations of the employer's choice and to collect all forms of medical information about the applicant.187 At this stage the employer may gather all forms of medical information about the applicant who has received a job offer, including genetic information, even if the medical information collected is not job-related.188 This means that the ADA does not restrict an employer's ability to conduct post-offer medical examinations that include genetic tests, although some state laws may restrict or prohibit use of genetic testing in this context.189 It is unlawful to revoke a job offer based on disability-related medical information if the applicant is able to perform essential job functions.190 Under the ADA it is also unlawful to fail to make reasonable accommodations for an applicant's disability when those accommodations would enable the applicant to perform essential job functions.191

In the third stage after employment begins, the ADA restricts the employer's ability to collect medical information about employees and to require employees to submit to medical examinations.192 Employers can only collect employees' medical information if it constitutes "disabilityrelated information," when it is job- related.193 The EEOC interprets this restriction to include "asking about an employee's genetic information."194 So, it is lawful under the ADA for an employer to require genetic tests as part of workplace-related medical examinations if the tests are jobrelated.195

Once medical information is lawfully collected under the ADA, use and disclosure of the information is further regulated. In all three of the stages of the employment relationship, the ADA prohibits the employer from using and disclosing applicants' and employees' medical information except for job-related reasons and limits the categories of persons who may receive confidential medical information.196

Viewed from a personal data protection perspective, the ADA addresses concerns of privacy related to applicants' and employees' medical information and restricts processing employees' and applicants' me\dical information including genetic information. Employees have more data protection than applicants, because applicants have no privacy protection from medical examinations or inquiries by their employers in the interval between receiving job offers and becoming employees. Details of applicants' or employees' medical history or medical conditions are often not job-related, yet employers are free to inquire into all medical information after making job offers and before employment begins. Although applicants who have job offers receive no privacy protection under the ADA from employers who choose to pry into sensitive medical information, they are protected from disability discrimination if their employers' use disability-related medical information that is not job-related in a discriminatory manner. Employees receive more privacy protections under the ADA, because the ADA generally prohibits employers from prying into employees' medical conditions beyond assessing the ability to perform job functions, need for accommodation, or need for time away from work. Employees also receive protection from disability discrimination, but the risk of unfair treatment based on genetic information for employees may be lower than for applicants because the employer simply is not permitted to obtain private medical information that is not job-related. Family medical leave laws also restrict the amount of information that an employer may request from an employee or an employee's doctor to substantiate an employee's leave request, and further require employers to keep confidential an employee's medical reasons for taking family medical leave.19

One major weakness of the ADA's privacy and nondiscrimination protections is that some genetic information may not rise to the level of ADA protection, and therefore use of this type of genetic information will not be covered by the ADA's nondiscrimination provisions. For example, would it be lawful under the ADA for an employer to use genetic information about an applicant that relates to the applicant's predisposition for a disabling disease, like breast cancer, as the basis for withdrawing a conditional offer of employment? The EEOC takes the position that it would be unlawful for the employer to withdraw a conditional offer of employment in these circumstances because a person who has a genetic predisposition to breast cancer would be protected as a disabled person by the ADA.198

But is this result necessarily true? As discussed earlier in this article, the statutory language of the ADA does not expressly address genetic information or genetic discrimination. So, unless Congress enacts legislation prohibiting this type of unfair employment action, ultimately it will be up to the courts to decide whether the ADA covers genetic discrimination and to what extent genetic information is covered by the ADA's medical confidentiality rules and medical examination rules. When the U.S. Supreme Court recently decided a trilogy of ADA cases involving the scope of the ADA, it severely limited the scope of the ADA. The Court held persons whose physical or mental impairments were correctable through medical treatment and other means were not protected by the ADA.199 The applicants and employees in these cases were all treated adversely by employers based on their physical impairments, yet they were not covered by the ADA and had no remedy under the ADA.200 For example, two applicants with severe vision impairments were not covered by the ADA because they wore glasses with corrective lenses that improved their vision to the level of persons without such impairments.201 However, because corrective lenses rendered the applicants not covered by the ADA, there was no violation of the ADA when the employer refused to consider them for jobs as pilots on the basis that their uncorrected vision without glasses was inadequate.202

The Supreme Court has not yet considered a case involving whether the ADA covers genetic testing or covers people treated adversely by their employers due to genetic information. When cases involving genetic discrimination in the workplace come before the courts, the courts will apply the rules set out in recent Supreme Court cases. As a result, like the plaintiffs in recent cases, many vulnerable persons are likely to find they are not sufficiently impaired to be covered by the ADA.203 So, even an applicant or employee who has a genetic predisposition to a serious disease, like breast cancer, may not be covered by the ADA-yet, under the rationale of recent Supreme Court cases, use of this genetic information for employment purposes would not be prohibited by the ADA.204 Because the ADA only prohibits disability discrimination, and the definition of covered persons is statutorily limited to those with substantially limiting impairments, those with records of such impairments, and those regarded as having substantially limiting impairments, employment action against a person with a medical condition or genetic profile that falls short of this definition is not covered by the ADA.205 For this reason there is no remedy under the ADA for violation of the medical inquiry, medical examination, or medical confidentiality rules by employers with respect to applicants and employees who are not covered as disabled persons under the ADA. Clearly the privacy of personal medical information is important for applicants and employees whether or not they are covered by the ADA. It can be assumed that many persons with genetic predispositions for disease will not be covered by the ADA because these persons have no current manifestation of disease that would limit major life activities.206 When a person has a genetic predisposition for disease, such as a genetic marker for increased risk of breast cancer, the genetic information is not usually related to the person's current ability to perform a job, making adverse employment action on this basis very unfair.

In contrast to the ADA's lack of express protection for applicants and employees against genetic discrimination, federal employees are protected from discrimination on the basis of genetic information under Executive Order 13145 (Executive Order).207 The Executive Order was issued by former President Clin

Source: American Business Law Journal

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