D R A F T
FOR DISCUSSION ONLY
MISUSE OF GENETIC INFORMATION IN EMPLOYMENT AND INSURANCE ACT
___________________________________________________
NATIONAL CONFERENCE OF COMMISSIONERS
ON UNIFORM LAWS
___________________________________________________
For Drafting Committee Meeting September 8-10, 2006
WITH PREFATORY AND REPORTER’S NOTES
Copyright © 2006
by
NATIONAL CONFERENCE OF COMMISSIONERS
ON UNIFORM LAWS
______________________________________________________________________________
The ideas, concepts and conclusions set forth in this draft, including the proposed statutory language and any comments or reporter’s notes, have not been reviewed, debated or approved by the National Conference of Commissioners on Uniform State Laws or the Drafting Committee. They do not reflect the views of the Conference and its Commissioners or the Drafting Committee and its Members and Reporter. Proposed statutory language may not be used to ascertain the intent or meaning of any promulgated final statutory proposal made by the National Conference of Commissioners on Uniform State Laws.
August 15, 2006
DRAFTING COMMITTEE ON MISUSE OF GENETIC INFORMATION IN EMPLOYMENT AND INSURANCE ACT
D. JOE WILLIS, 549 SW Mill View Way, Suite 100, Bend, OR 97702, Chair
JOANNE B. HUELSMAN, 235 W. Broadway, Suite 210, Waukesha, WI 53186
SHELDON F. KURTZ, University of Iowa College of Law, 446 BLB, Iowa City, IA 52242
PETER F. LANGROCK, P.O. Drawer 351, Middlebury, VT 05753
JAMES C. NELSON, Montana Supreme Court, 215 N. Sanders St., Room 425, P.O. Box 20031, Helena, MT 59602
LINDA NEUMAN, 28218 218th St., LeClaire, IA 52753
ARTHUR H. PETERSON, P.O. Box 20444, Juneau, AK 99802
KEN H. TAKAYAMA, Legislative Reference Bureau, State Capitol, Room 446, Honolulu, HI 96813
JAMES A. WYNN, JR., NC Court of Appeals, P.O. Box 888, Raleigh, NC 27602
JOAN ZELDON, District of Columbia Superior Court, 500 Indiana Ave. NW, Room 1640, Washington, DC 20001
ELLEN E. DEASON, The Ohio State University, 55 W. 12th Ave., Columbus, OH 43210,
Reporter
EX OFFICIO
HOWARD J. SWIBEL, 120 S. Riverside Plaza, Suite 1200, Chicago, IL 60606, President
MICHAEL B. GETTY, 1560 Sandburg Terr., Suite 1104, Chicago, IL 60610, Division Chair
AMERICAN BAR ASSOCIATION ADVISOR
ANNA MASTROIANNI, University of Washington, William H. Gates Hall, Box 353020, Seattle, WA 98195-3020, American Bar Association Advisor
ROBYN S. SHAPIRO, 777 E. Wisconsin Ave., Suite 2000, Milwaukee, WI 53202, American Bar Association Advisor
EXECUTIVE DIRECTOR
WILLIAM H. HENNING, University of Alabama School of Law, Box 870382, Tuscaloosa, AL 35487-0382, Executive Director
Copies of this Act may be obtained from:
NATIONAL CONFERENCE OF COMMISSIONERS ON UNIFORM STATE LAWS
211 E. Ontario Street, Suite 1300
Chicago, Illinois 60611
312/915-0195
www.nccusl.org
MISUSE OF GENETIC INFORMATION IN EMPLOYMENT AND INSURANCE ACT
TABLE OF CONTENTS
SECTION 202. EMPLOYER ACCESS TO GENETIC INFORMATION
SECTION 203. EMPLOYER-PROVIDED GENETIC TESTING
SECTION 204. EMPLOYER USE OF GENETIC INFORMATION
SECTION 205. EMPLOYEE ACCESS TO GENETIC INFORMATION
SECTION 206. EMPLOYER RETENTION OF GENETIC INFORMATION
SECTION 207. EMPLOYER DISCLOSURE OF GENETIC INFORMATION
SECTION 208. REMEDIES AND ENFORCEMENT
SECTION 302. HEALTH INSURER ACCESS TO GENETIC INFORMATION
SECTION 304. HEALTH INSURER USE OF GENETIC INFORMATION
SECTION 305. HEALTH INSURER RETENTION OF GENETIC INFORMATION
SECTION 306. HEALTH INSURER DISCLOSURE OF GENETIC INFORMATION
SECTION 307. ENFORCEMENT AND REMEDIES
ARTICLE 4
LIFE, DISABILITY INCOME, AND LONG-TERM CARE INSURANCE
SECTION 402. INSURER ACCESS TO GENETIC INFORMATION
SECTION 403. INSURER USE OF GENETIC INFORMATION
SECTION 404. INSURER RETENTION OF GENETIC INFORMATION
SECTION 405. INSURER DISCLOSURE OF GENETIC INFORMATION
SECTION 406. ENFORCEMENT AND REMEDIES
SECTION 501. UNIFORMITY OF APPLICATION AND CONSTRUCTION
SECTION 502. RELATION TO ELECTRONIC SIGNATURES IN GLOBAL AND NATIONAL COMMERCE ACT
SECTION 503. SAVINGS AND TRANSITIONAL PROVISIONS
MISUSE OF GENETIC INFORMATION IN EMPLOYMENT
AND INSURANCE ACT
The scientific developments in the field of genetics are often characterized as a “revolution.” This revolution is ushering in a new era of greater understanding of human biological processes and the promise of new approaches to medicine that can tailor medical treatments to individuals’ genetic traits. Genetic tests also offer the possibility of identifying individuals who are at risk of developing certain diseases in the future. Unfortunately, while risk information has the potential to improve preventative medicine, it is also subject to misunderstanding and misuse.
There are important policy issues concerning the appropriate form and scope of regulation of genetic information. Perhaps it would be possible to agree on several underlying policy goals as a starting point. One proposal for appropriate goals is that (1) individuals should not be coerced into having genetic tests; (2) individuals who want to be tested should not be discouraged through fear of how the results will be used; (3) genetic information should not be used for irrational discrimination, that is, where there is no scientific basis for discrimination; and (4) even “rational” discrimination should be prohibited when it violates public policy, including the policy of preventing discrimination on the basis of disability. Cynthia Nance, Paul Miller, & Mark Rothstein, Discrimination in Employment on the Basis of Genetics, 6 Employee Rights & Employment Policy Journal 57, 79 (2002).
Another commentator phrases these goals in a similar way, with a proposal that regulation is justified: (1) to protect the few people whose genetic inheritance puts them at risk for rational genetic discrimination; (2) to protect those who are at risk of irrational genetic discrimination; and (3) to allay public fears that could impede genetic research. Henry T. Greely, Genotype Discrimination: The Complex Case for Some Legislative Protection, 149 U. Pa. L. Rev. 1483, 1500 (2001). One might also add an additional goal to treat individuals with respect by maintaining the privacy of their genetic information.
The point about irrational discrimination needs elaboration. Because the human genome has been portrayed with images such as “blueprint,” “code,” and “future diary,” public misunderstandings of the role of genetics are common. Employers and insurers cannot be expected to be exempt from such misunderstandings, which may cause them to exaggerate the predictive potential of genetic information.
There are some rare genetic diseases, such as Huntington’s disease, that are caused by a single gene and that can be predicted with certainty by an individual’s genetic sequence. These are the diseases that arguably justify “rational” discrimination. But such monogenetic diseases are the exception. They have received much attention as the first diseases for which researchers established a genetic link, but they afflict relatively few individuals. And even with such diseases, there is usually variation in the age that symptoms appear and in their severity.
The genetic causation of most diseases is far more complex. It is more common for medical conditions to result from interactions among multiple genes and with the environment. Most of the diseases that are linked to a genetic variation do not appear in all of the individuals with that genotype. This is termed “incomplete penetrance.” For example, certain forms of the BRCA 1 gene are strongly associated with susceptibility to breast cancer. But only 50 to 85 percent of women who have this form of the gene will ever develop the disease. Moreover, the frequency of particular gene variants and their degree of penetrance often differ among ethnic groups, which also complicates the clinical sensitivity of genetic tests and their predictive capabilities.
Another complicating factor for accurate prediction is that often a large number of genetic variations can cause the same disease. More than 180 different sequences of beta-globin genes are associated with the blood disease beta-thalassemia. And the severity of the symptoms of patients with this disease vary dramatically. Similarly, there are more than 300 forms of the gene responsible for cystic fibrosis. Unfortunately, identifying the variant of the gene does not explain the variation in symptoms.
Low penetrance, multiple genetic variations that may cause a single disease, and other sources of complications diminish the predictive value of genetic testing. In addition to the over-inclusiveness of many medical predictions based on genetic tests (in that a person with a predisposing genotype may never have symptoms of the disease), genetic predictions are also often extremely under-inclusive. For example, the predisposing variants of the BRCA 1 and BRCA 2 genes are present in only 5 to 10 percent of breast cancer patients. Thus genetic data often do not provide an accurate individualized prediction. This is a major justification for the regulation of genetic information.
Many of the existing state statutes on use of genetic information fall into three general categories: employment, health insurance, and other insurance, usually life, disability and long-term care. There is some overlap, but often states treat each of these areas somewhat differently. Therefore, for ease of initial consideration, the draft is organized in separate articles corresponding to these topics.
It is important to remember, however, that some states have statutes that cut across all three areas and govern other topics as well. For example, statutes that concentrate on genetic testing or genetic privacy typically apply to issues of consent, disclosure, retention of samples, use of genetic material, and use of databases generally. These issues have applications beyond the context of employment and insurance, and will be relevant to the National Conference of Commissioners on Uniform State Law’s decisions on the eventual scope of the act.
Other issues also cut across the three main areas of state genetic legislation. There is a major policy debate over the wisdom of “genetic exceptionalism,” that is, the regulation of genetics testing and information as a special category rather than as part of more comprehensive regulation of medical testing and information. See generally T.H. Murray, Genetic Exceptionalism and Future Diaries: Is Genetic Information Different from other Information, in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (Mark A. Rothstein ed. 1977); Sonia M. Sutter, The Allure and Peril of Genetics Exceptionalism: Do We Need Special Genetics Legislation?, 79 Wash U. L.Q. 669 (2001).
In the course of this debate, many arguments for singling out genetics for special attention have been raised and rejected. In the early 1990s, the Task Force on Genetic Information and Insurance, a joint working group of the National Institutes of Health and the U.S. Department of Energy, considered and rejected three justifications for such a policy: (1) They decided that genetic information is not sufficiently distinct from other health information on the basis of its prophetic potential. Genetic predispositions can be affected by many factors and information on non-genetic characteristics, such as lifestyle, may be better health predictors; (2) Genetic information is also not unique in its implications for family members; and (3) genetic information is not the only type of health information with the ability to sigmatize.
Other arguments for exceptionalism include that genetic information is particularly sensitive in that it identifies normal variations that fuel discrimination despite their lack of clinical significance. Genetic codes are also viewed as immutable, so that one test can follow a person forever, and genetic information is more probabilistic than other types of medical information. These arguments can also be refuted as a basis for exceptionalism on the ground that they apply as well to other types of health information. Laine Friedman Ross, Genetic Exceptionalism vs. Paradigm Shift: Lessons form HIV, 29 J. L. Med. & Ethics 141 (2001).
There are also objections to treating genetic information separately on practical grounds. The distinction between genetic and non-genetic disorders is increasingly difficult to draw; most conditions have both a genetic and non-genetic component. Opponents of exceptionalism also contend that it is unrealistic to separate genetic information in medical records, so that it would be impossible to comply with restrictions on disclosing genetic information to employers or insurers. L.O. Gostin & J.G. Hodge, Genetic Privacy and the Law: An End to Genetics Exceptionalism, 40 Jurimetirics 21 (1999). Also, there is a social argument that it is unwise to enact laws that treat genetic conditions as if there is a stigma attached to them because that reinforces such attitudes and becomes a self-fulfilling prophecy. Moreover, treating genetics as unique only encourages the public view that genetics exert a special control over our lives, a view termed “genetic essentialism.” See, e.g., Rochelle Cooper Dreyfus & Dorothy Nelkin, The Jurisprudence of Genetics, 45 Vand. L. Rev. 313 (1992).
Most of the opponents of genetic exceptionalism do not oppose privacy protections, rather they advocate more holistic approaches to health information and its use in employment and insurance. The larger debate is about how to protect medical data from harmful uses while providing access for uses that individuals, clinicians, and society regard as beneficial. Genetic information is one part of the problem posed by the ease of collecting, storing, and disseminating personal information. Thus it is possible to argue that the exceptionalism debate is a distraction from the more important questions about how regulations should be adapted to new scientific developments. Zita Lazzarini, What Lessons Can We Learn from the Exceptionalism Debate (Finally)?, 29 J. L. Med. & Policy 149 (2001). In the context of health insurance, one commentator maintains that “[g]enetic equity should be regarded not as an exceptional goal, but as an aim consistent with a broader movement toward equitable access to health care in a time of scarcity.” John V. Jacobi, Genetic Discrimination in a Time of False Hopes, 30 Fla. St. U. L. Rev. 363, 364 (2003).
Scientific advances in genetics mean that a very large amount of information can be obtained from one small sample that is easily obtained and analyzed, yielding data that is easily stored and disseminated. This is not unique, but the concentration of information makes genetic information, which combines the power of many other types of medical information, seem particularly threatening. The drafting committee’s charge responds to the large number of states that have enacted legislation dealing with the threats associated with genetic information. That legislation is highly inconsistent and often deals only partially with the issues. The charge does contemplate genetic exceptionalism by focusing on use of genetic information rather than on health information or privacy more generally. Broader measures for all medical information may not be practical at this time. Nonetheless, it is still important to respond to problems with the use of genetic information. Perhaps regulation of the use of genetic information can serve as an example for policies that need to be developed for the treatment of medical information more generally.
Employment
General Policy Issues
Many contend that genetic information has few appropriate uses in the workplace. The concern is that if employers are permitted consider genetic information in making personnel decisions, individuals may be unfairly barred or dismissed from employment for reasons that are not related to their ability to do the job. This is an especially high risk with predictive genetic information because so many persons tend to exaggerate the role of genes in disease and mistakenly regard an increased risk of an illness as a certainty that it will occur.
Employers arguably have an economic incentive to use genetic information to avoid hiring employees with higher medical insurance claims, higher absenteeism, or lower productivity. They may also wish to avoid the effect of high health care costs incurred by employees’ dependents. Somewhat perversely, because the federal Health Insurance Portability and Accountability Act (HIPPA) protects employees against discrimination in group health insurance based on medical conditions, including genetic characteristics, the most effective way for employers to avoid high insurance costs is to screen applicants and avoid hiring high-risk individuals. Nonetheless, there are few well-documented cases of genetic discrimination in employment.
In 1996, the NIH-DOE Joint Working Group on Ethical, Legal, and Social Implications of Human Genome Research (ELSI Working Group) and the National Action Plan of Breast Cancer developed and issued the following recommendations for state and federal policy makers to protect against genetic discrimination in employment. To a large extent, these recommendations mirror the approach of the Americans With Disabilities Act, described below.
• Employment organizations should be prohibited from using genetic information to affect the hiring of an individual or to affect the terms, conditions, privileges, benefits or termination of employment unless the employment organization can prove this information is job related and consistent with business activity.
• Employment organizations should be prohibited from requesting or requiring collection or disclosure of genetic information prior to a conditional offer of employment, and under all circumstances, employment organizations should be prohibited from requesting or requiring collection or disclosure of genetic information unless the employment organization can prove this information is job related and consistent with business necessity, or otherwise mandated by law. Written and informed consent should be required for each request, collection or disclosure.
• Employment organizations should be restricted from access to genetic information contained in medical records released by individuals as a condition of employment, in claims filed for reimbursement of health care costs and other sources.
• Employment organizations should be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization should be required for each disclosure and include to whom the disclosure will be made.
• Violators of these provisions should be subject to strong enforcement mechanisms, including private right of action.
Karen Rothenberg et al., Genetic Information and the Workplace: Legislative Approaches and Policy Challenges, 275 Science 1755 (1996).
The Federal Regulatory Context
The states are legislating in a regulatory environment in which two federal statutes provide modest legal protections against discrimination in employment on a genetic basis: Title VII of the Civil Rights Act of 1964 (Title VII) and the Americans with Disabilities Act (ADA). These statutes are also important because many states have their own version of the legislation which they have modified to incorporate genetic protections.
Title VII prohibits employer discrimination on the basis of race, sex, color, national origin, and religion. It is applicable to genetic discrimination if an employer tests a group of employees in one of the protected classes. For example, the court in Norman-Bloodsaw v. Lawrence Berkeley Laboratory, 135 F.3d 1260 (9th Cir. 1998), held that testing only black employees for the sickle cell trait violated Title VII by imposing a condition of employment on the basis of race. It is also possible that testing all employees could violate the Act if the test were for a trait closely associated with a protected group, such as sickle cell trait (which is more prevalent among African-Americans) or Tay-Sachs disease (associated with Ashkenazi Jewish ancestry). However, in these circumstances the statute would require the difficult showing that the testing was a pretext for intentional discrimination against the group or that it had a statistically significant disparate impact on employment opportunities of members of the group. Most importantly, the narrow focus on employers’ actions with respect to certain groups means that Title VII would certainly not apply if an employer instituted a screening program for traits that are not strongly associated with a protected group. See Pauline T. Kim, Genetic Discrimination, Genetic Privacy: Rethinking Employee Protections for a Brave New Workplace, 96 NW U. L. Rev. 1497 (2002).
The ADA could provide some protections against genetic discrimination through its regulation of disability discrimination, although this potential is limited by the United States Supreme Court’s narrow interpretation of the statute. See, e.g., Sutton v. United Air Lines, Inc., 527 U.S. 471, 484-85 (1999) (stating ADA is intended to have limited coverage). “Disability” is defined under the ADA as (1) a physical or mental impairment that substantially limits one or more of the major life activities of an individual; (2) a record of such impairment; or (3) being regarded as having such an impairment. 42 U.S.C. § 12112(d)(2). If a genetically-caused disease results in a disability under the first prong of the definition, the ADA’s protections will apply. The genetic connection is irrelevant; the statute protects the person because of his or her disability, not its cause. Similarly, under the second prong the ADA covers individuals with a prior record of a genetically-related disability, such as a person recovering from a cancer. Of course, if these genetic conditions do not qualify under the definition of “disability” by substantially limiting a major life activity, the individual is not covered by the ADA.
The application of the ADA to discrimination based on a genetic trait that is not manifested in symptomatic disease is a more difficult question. In 1995 the EEOC issued a policy statement that an individual should be “regarded as” having a disability under the statute’s third prong if the employer discriminates on the basis of “genetic information relating to illness, disease, or other disorders.” EEOC Order No. 915.002 § 902 (1995). This interpretation of the statute has not been considered by the courts, although several U.S. United States Supreme Court justices have expressed their disapproval in dicta. See, e.g., Bragdon v. Abbott, 524 U.S. 624, 661 (1998) (Rehnquist, J., joined by Scalia, J. & Thomas, J., concurring in part & dissenting in part). Moreover, the EEOC’s position has been criticized in both conceptual and practical terms. See, e.g., Pauline T. Kim, Genetic Discrimination, Genetic Privacy: Rethinking Employee Protections for a Brave New Workplace, 96 NW U. L. Rev. 1497 (2002).
The ADA protects a disabled job applicant or employee from discrimination in the workplace. This includes a duty to provide reasonable accommodations to a qualified individual with a disability unless the accommodation would impose an undue hardship on the operation of the business. The ADA also regulates testing and access to information by prohibiting medical examinations or testing before a job offer. However, after making a “conditional offer,” an employer may require an applicant to take a medical exam. Employers also have the right at that point in the hiring process to require that individuals sign a blanket release disclosing all their medical records to the employer. Employers may also test existing employees if they can justify the testing as job-related. Thus, despite the ADA’s protections against discrimination through its requirements for reasonable accommodations, the ease of employer access to medical information may deter individuals from obtaining testing.
Current State Statutes
Concern about economic incentives for employers has led 34 states, as of January 2006, to enact statutes that regulate the use of genetic information or genetic testing by employers. One group of states has used an existing state statute as a platform, amending it to apply to genetic testing or information. A second, larger, group has enacted statutes that are specifically tailored for genetic issues.
In the first group, some states have extended their disability statutes to prohibit discrimination by employers based on genetic information under the rubric of disability. See, e.g., Hawaii RS §§ 378-1 to 378-6; Illinois, 410 ILCS 513/5 to 513/30 (tied to federal Americans with Disability Act); Mich Comp Laws Ann §§ 37.1201-37.1202; NY Exec Law §§ 292, 296 (adds genetic conditions to the definition of protected disability).
Other states have built on their statutes prohibiting discrimination in employment, expanding them from race, sex, national origin, and other protected classes, to include discrimination based on genetic information. See, e.g., Ariz Rev Stat Ann § 41-1463; Cal Govt Code §§ 12926, 12940; Conn Gen Stat Ann § 46a-60; Mass Gen L ch 151B; Nev Stat § 613.345; NJ Stat Ann §§ 10:5-5, 10.5-12.
Wisconsin has used its Fair Employment Act as its vehicle, amending it to restrict the ability of employers to conduct genetic testing and use genetic information. Wis Stat § 111.372.
States in the second group have enacted special statutes that regulate genetic testing or the use of genetic information. This is the largest group of states, but the extent to which they concentrate on the context of employment varies to some extent. Most commonly, the provisions are tailored specifically for employment. See, e.g., Ark Code Ann §§ 11-5-401 to 11-5-405; Del Code Ann § 710; Kan Stat Ann §§ 44-1002(m), 44-1009(a)(9); La Rev Stat Ann §§ 23.302, 23.368-369; Iowa Code § 729.6; Me Rev Stat Ann tit 5, § 19301; Md Code Ann art. 49B §§ 15,16; Minn Stat § 181.974; Neb Rev Stat § 48-236; NH Rev Stat Ann §§ 141-H:1 to 141-H:5; NC Gen Stat § 95-28.1A; Okla Stat tit 36, § 3614.2; Or Rev Stat § 659A.300; RI Gen Laws §§ 28-6.7-1 to 28-6.7-4; S.D. codified laws §§ 60-2-20 to 60-2-21; Tex Lab Code Ann § 21.401; Utah Code Ann §§ 26-45-101 to 26-45-106; Vt Stat Ann tit 18, §§ 9331-9335; Va Code Ann § 40.1-28.7:1(A); Wash Rev Code Ann § 49.44.180. Some statutes cover genetic information more broadly, regulating its use in employment along with insurance and other activities. See, e.g., N Mex Stat Ann § 24-21-2. For other statutes, the focus is on broad regulation of genetic testing and information, with coverage that applies to employers along with others who might use the information. See, e.g., Fla Stat § 760.4; NJ Stat Ann § 10:5-44, Or Rev Stat § 192.537.
The states that have special statutes limiting genetic testing or the use of genetic information in the employment setting have obviously embraced exceptionalism. But so, for the most part, have the states that have added discrimination based on genetic information to their employment discrimination statutes. This is the case because genetic characteristics are singled out and treated differently from other medical conditions under these statutes. An exception is California, whose statute prohibits employment discrimination on the basis of medical conditions in addition to the more traditional categories of race, sex, and national origin. Under this statutory scheme, a genetic characteristic is treated as a medical condition and receives the same protections as other health problems. Finally, disability statutes by definition single out certain types of medical conditions for special protection: those that are disabling because they limit a major life activity. When genetic predispositions or conditions are defined as disabilities, they are treated similarly to this class of medical conditions. However, to the extent that a genetic condition does not fit within the rubric of “limiting a major life activity,” it is being treated differently from other non-disabling medical conditions under these statutes.
Health Insurance
General Policy Issues
Discrimination in health insurance is a uniquely American problem because the United States does not guarantee coverage of health care expenses for its citizens as other wealthy nations do. Legislation in this area responds to public perceptions that health insurers will deny coverage or increase premiums based on predictive genetic information. This may be irrational discrimination. In addition, individuals who fear reduced or more expensive health care coverage may avoid genetic tests that could provide useful information for improving their health. The legislative restrictions are designed to avoid these outcomes.
The main argument against regulation in this market is that genetic information would allow insurers to decrease adverse selection. Adverse selection is the disproportionate purchase of insurance by individuals who have medical reasons to believe they will need to make claims. It leads to insurer losses when applicants fail to disclose the relevant health information and is a particular concern with individual health insurance policies. The industry and a number of scholars contend that avoiding losses due to adverse selection based on genetic information will lead to more affordable insurance.
In 1995, the NIH-DOE Joint Working Group on Ethical, Legal, and Social Implications of Human Genome Research (ELSI Working Group) and the National Action Plan of Breast Cancer developed and issued the following recommendations for state and federal policy makers to protect against genetic discrimination in health insurance. The recommendations apply to both group and individual health plans.
• Insurance providers should be prohibited from using genetic information, or an individual's request for genetic services, to deny or limit any coverage or establish eligibility, continuation, enrollment or contribution requirements.
• Insurance providers should be prohibited from establishing differential rates or premium payments based on genetic information or an individual's request for genetic services.
• Insurance providers should be prohibited from requesting or requiring collection or disclosure of genetic information.
• Insurance providers and other holders of genetic information should be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization should be required for each disclosure and include to whom the disclosure would be made.
Kathy Hudson et al., Genetic Discrimination and Health Insurance: An Urgent Need for Reform, 270 Science 392 (1995).
One study of state restrictions on the use of genetic information in health insurance concluded that there are almost no well-documented cases of insurers asking for genetic test results for pre-symptomatic conditions in either states with regulation or states without such regulation. The author argued that use of genetic information is not cost effective and is not seen by insurers as increasing the accuracy of their underwriting. Nonetheless, he believes that state laws will have an effect by making it less likely that insurers will use genetic information in the future, because the laws have helped convince them that use of this information is not socially acceptable. Mark A. Hall, Legal Rules and Industry Norms: The Impact of Laws Restricting Health Insurers’ Use of Genetic Information, 40 Jurimetrics J. 93 (1999).
The Federal Regulatory Context
As with employment, the states legislate against the background of federal statutes. The 1996 Health Insurance Portability and Accountability Act (HIPPA) partially addresses the use of genetic information in health insurance. It covers only insurers providing group health insurance for 50 or more individuals. Under HIPPA, an insurer may not deny an applicant coverage as a result of a health-status related factor, including genetic information. The law also prohibits exclusions for pre-existing conditions on the basis of a genetic predisposition to a particular condition. However, employers may restrict coverage, restrict benefits, or charge higher premiums so long as they treat like individuals alike.
The HIPPA regulates only a portion of the health insurance market. It does not apply to employees in small group health insurance plans or to individual health insurance coverage. In addition, there is no federal provision on the use of genetic information in health insurance for employees covered by self-insured health plans, which are used by most large employers. These plans are subject to the federal Employee Retirement Income Security Act (ERISA), which preempts state regulation of employer sponsored welfare benefit plans.
Current State Statutes
The law in 47 states restricts the use of genetic information by health insurers in some way. Some states impose restrictions only on group health insurance (Ak, Iowa, SD, Wy), and some only on individual policies (Hawaii, Nebraska, WVa), but most cover both group and individual health insurance.
There are five main types of state regulation of genetics in health insurance. First, many states prohibit insurers from requiring individuals to have genetic tests or to disclose genetic information to the insurer. (Ark, Cal, Col, Fla, Ga, Haw, Ill, Ind, Kan, Md, Mich, Minn, Mo, Montana, Neb, NH, NMex, NY, OH, OK, Or, RI, SD, Tenn, UT, Wis). In a few states (Mich, Neb) this restriction on access to information stands alone, but most states have additional measures.
Second, a number of states prohibit health insurers from disclosing genetic information without informed consent. (Ariz, Cal, Col, Del, Ga, Haw, Ill, Ky, La, Me, Md, Mass, Mich, Mo, Nev, NH, NJ, NMex, NY, Or, RI, SC, Tenn, Tex, Vt, Va, Wash).
In addition to these privacy-based protections, there are also restrictions on health insurers’ use of genetic information. In a third category, a large number of statutes provide that insurers may not establish rules for eligibility, that is, deny coverage, based on genetic information. (Alaska, Ariz, Ark, Cal, Col, Conn, Del, Fla, Ga, Haw, Ill, Ind, Iowa, Kan, Ky, La, Me, Mass, Minn, Mo, Mont, Nev, NH, NJ, NMex, NY, NC, OH, OK, Or, RI, SC, SD, Tenn, Tex, UT, Ve, Va, WVa, Wis, Wy).
Fourth, most of these same states impose some type of limit on the use of genetic information for risk selection or classification in health insurance, such as higher premiums, reduced coverage or reduced benefits. Many states simply prohibit insurers from considering genetic information for these purposes.
Fifth, some states do not permit health insurers to impose pre-existing condition exclusions based on predictive genetic information in the absence of a diagnosis based on symptoms of the disease or condition. (Alaska, Conn, Idaho, Iowa, Ky, others ).
This draft does not consider the emerging health issue of access to genetic services and insurance coverage for their costs. Currently the states with laws in this area cover newborn screening and genetic childhood diseases. According to the National Conference of State Legislatures, no state currently requires coverage of testing for adult onset genetic disorders such as breast cancer, but bills are being introduced frequently.
Life, Disability, and Long-Term Care Insurance
General Policy Issues
Life, disability, and long-term care insurance can be distinguished from health insurance in that individual underwriting of policies is more common because a smaller proportion of the market consists of group coverage for these types of insurance. This means that insurers take individual characteristics into account in determining risk and use this risk calculation in determining an individual’s premium rates and terms and conditions for coverage and benefits. Individual underwriting could be done more accurately when an insurer has access to genetic information if that genetic information can be used to predict the likelihood of claims accurately.
The argument for restricting access to genetic information is that its predictive power is easily exaggerated and insurers may force applicants to take genetic tests and then deny insurance or charge more based on genetic characteristics. This raises the possibility that a large class of people will lack coverage even though they are not sick and never will become sick. On the other side, as with health insurance, insurers worry about adverse selection. If applicants seek coverage because a genetic characteristic exposes them to risk, but the insurer does not have this information, this puts the insurer at a financial disadvantage. See generally Mark A. Rothstein, ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (2004).
The solution adopted by many of the states that regulate in this area is to require an actuarial justification for the use of genetic information in determining eligibility and in underwriting. There are questions, however, about whether there is a sufficient scientific basis for assessing risk. A 1997 study by the Human Genetics Advisory Commission in the United Kingdom concluded that it is unlikely that actuarially-sound genetic predictions of adult death will be validated and available anytime in the near future. Genetic tests need to be connected to medical and epidemiological research to establish what consequences for health and life-span can be inferred from a given genetic test. The Commission concluded that a requirement to disclose genetic tests as a condition of obtaining insurance would be acceptable only after research has established an association between a given pattern of test results and life events that are relevant for the insurance product. They recommended continuing a moratorium on requiring test results and predicted that the life insurance industry could withstand the limited adverse selection that might result from non-disclosure. Human Genetics Advisory Commission, The Implications of Genetic Testing for Insurance (1997).
Current State Statutes
Eighteen states have legislation regulating genetic testing or the use of genetic information in life, disability or long-term care insurance. Of these 18 states, only eight have provisions that apply to all three types of coverage. Sixteen statutes that pertain to life insurance, 16apply to disability insurance, and nine cover long-term care insurance. While many of the other states are silent on genetic information in the context of these types of insurance, some make clear that their restrictions on the use of genetics in health insurance do not apply to other insurance. (Ga, Ind, NH, OK, RI, Tex).
In the life insurance category, several of the states forbid insurers from requiring genetic tests and regulate the terms under which an insurer may disclose the results of voluntary tests. (Cal, Mass, Minn, NY, Or, Vt). Other states require an actuarial justification for using genetic information in denying coverage or underwriting, which means the insurer must be able to demonstrate a significant difference in claims due to a particular genetic condition. (Ariz, Kan, Maine, Md, Mass, Mont, NJ, Nmex, Vt, Wis). Florida and North Carlina prohibit discrimination based on the sickle cell trait.
Provisions are similar among the states that regulate disability insurance. States tend to prohibit insurers from requiring tests (Cal, Mass, Or), restrict use of information for eligibility and underwriting (Kan, Wy), or require actuarial justification for underwriting discrimination (Ariz, Maine, Mass). A few states impose conditions similar to those more commonly applicable to health insurance. They prohibit insurers from rejecting applicants for disability insurance (Arizona) or imposing limitations on coverage for pre-existing conditions (Idaho, Wyoming) on the basis of a genetic characteristic unless it has resulted in a diagnosed condition.
The pattern of regulation is similar, but less common, for long-term care insurance. Some states prohibit insurers from requiring genetic tests (Cal, Mass, Or, Vt) or require an actuarial justification for the use of genetic information in underwriting (Kan, Maine, Mass, Mont, NMex).
MISUSE OF GENETIC INFORMATION IN EMPLOYMENT
AND INSURANCE ACT
SECTION 101. SHORT TITLE. This [act] may be cited as the Misuse of Genetic Information in Employment and Insurance Act [year of enactment].
SECTION 102. DEFINITIONS. In this [act]:
(1) “Disability income insurance” means insurance intended to protect against loss of occupational earning capacity arising from injury, sickness, or disablement. The term includes insurance that provides benefits for overhead expenses of a business or profession when the insured becomes disabled.
(2) “Employee” means an individual who is applying to work for hire or who works for hire, including an independent contractor or an individual employed in a supervisory, managerial, or confidential position.
(3) “Employer” means a person that has employed at least one employee for each working day in each of 20 or more calendar weeks in the current or preceding calendar year.
(4) “Family member” means an individual’s spouse or [partner], an individual’s dependent child, and all individuals related by blood to the individual, spouse or [partner], or dependent child.
(5) “Genetic information” means information based on an individual’s genetic tests, the genetic tests of an individual’s family member, or an individual’s family member’s history of a genetic disease or disorder.
(6) “Genetic monitoring” means a periodic examination to evaluate acquired modifications to genetic material, such as chromosomal damage or evidence of increased occurrence of mutations, that may have developed due to exposure to toxic or hazardous substances.
(7) “Genetic service” means a genetic test, genetic counseling, or genetic education.
(8) “Genetic test” means an analysis of human genetic material that detects a genotype or genetic marker.
(9) “Health insurance” means a health care arrangement that pays for, purchases, or furnishes health care services to patients, insureds, or beneficiaries, including:
(A) insurance that covers hospital, medical, or health expenses;
(B) a self-insured health plan;
(C) a health maintenance organization;
(D) a preferred provider organization;
(E) a medical service organization;
(F) a physician-hospital organization;
(G) a pre-paid health care service plan; or
(H) other health care arrangement in which risk is assumed.
(10) “Insurer” means a person engaged in the business of health, life, disability income, or long-term care insurance in this state regardless of where a contract of insurance is written or a plan is administered. The term includes an insurance agent, broker, adjuster, underwriter, or third-party administrator.
(11) “Life insurance” means insurance for the risk of death. The term includes endowments and fixed and variable annuities.
(12) “Long-term care insurance” means insurance that provides coverage for not less than 12 consecutive months on an expense-incurred, indemnity, prepaid, or other basis for one or more necessary diagnostic, preventive, therapeutic, rehabilitative, maintenance, or personal care services provided in a setting other than an acute care unit of a hospital. The term includes a policy or rider that provides for payment of benefits based upon cognitive impairment or the loss of functional capacity.
(13) “Person” means an individual, corporation, business trust, estate, trust, partnership, limited liability company, association, joint venture, public corporation, government or governmental subdivision, agency or instrumentality, or any other legal or commercial entity.
(14) “Predisposing genetic characteristic” means a gene or genetic marker that is determined from genetic information and is associated with an individual’s statistically significant increased risk of developing a disease or medical condition for which the individual is presently asymptomatic.
(15) “Record” means information that is inscribed on a tangible medium or that is stored in an electronic or other medium and is retrievable in perceivable form.
(16) “Sign” means, with present intent to authenticate or adopt a record:
(A) to execute or adopt a tangible symbol; or
(B) to attach to or logically associate with the record an electronic symbol, sound, or process.
Legislative Note: In the definition of “family member,” states should insert for [partner] the appropriate term for an unmarried partner who is eligible for coverage by health insurance, such as “domestic partner,” “significant other,” “partner,” or a similar term.
Reporter’s Notes
Paragraph (1). (Disability income insurance) This definition of disability income insurance is used in several state statutes on genetic testing. See, e.g., Cal. Ins. Code § 10147; N.H. Rev. Stat. Ann. § 141-H:1.
Paragraph (2). (Employee) The definition of employee is adapted from the National Conference of Commissioners on Uniform State Law’s Model Employment Termination Act. The primary modification is that the definition includes rather than excludes independent contractors. In addition, applicants for employment are also included within the definition of employee. The drafting committee has not differentiated protections for applicants in the substantive portions of the act from those that apply to employees.
Paragraph (3). (Employer) The definition of employer is also adapted from the National Conference of Commissioners on Uniform State Law’s Model Employment Termination Act. It is linked to the definition of “person” and therefore encompasses all types of entities, including governmental and non-profit employers.
As the definition of employer is currently drafted, the act would cover all employers regardless of size. One consideration is whether the requirements of the act would prove too burdensome for small employers. Many statutes specify a minimum size using the number of employees as a proxy for size. For example, Title VII of the Civil Rights Act of 1964 covers employers who had 15 or more employees for each working day in 20 or more weeks over the course of a year. The definition in the Uniform Law Commissioner’s Model Employment Termination Act was modeled on Title VII, but it reduces the required number of employees to five, and extends the qualifying period to two years.
Another way to limit the types of employers that are covered would be to exclude immediate family members from the count of employees, as is done in the Fair Labor Standards Act and the National Conference of Commissioners on Uniform State Law’s Model Employment Termination Act. In addition, some state statutes exclude particular employee groups, such as household workers or farm workers, in determining employer status.
Paragraph (4). (Family member) A family member is defined broadly to encompass all individuals whose own genotype could influence an employment or insurance decision. The term includes (1) biological relations whose genetic information might provide information about the genetic make-up of an individual employee, insured, or applicant for employment or insurance, (2) dependants whose risk of future genetically-linked medical conditions could affect employer health care costs or family insurance coverage and hence employment or insurance decisions, and (3) dependants’ biological relations whose genetic information might provide information about the genetic make-up of a dependant. The term “dependent child” is intended to include both adopted and biologically-related children.
“Partner” is included in the definition of family member because many employers provide health insurance for employees’ unmarried partners. Therefore, an unmarried partner can fall into the second category above. Because terminology for this status varies among the states, each state should substitute its term for an unmarried partner as described in the legislative note.
Paragraph (5). (Genetic information) The definition of “genetic information” is modeled on the type of definition that has been chosen by the greatest number of states in that it includes information on genetic characteristics broadly, whether it is obtained from tests or family medical history. (Cal, Conn, Hawaii, LA, Maine, MD, Mass, Mich, NJ, NMex, NC, RI, SD, TX, WA). A smaller number of states limit protected genetic information to the results of laboratory genetic testing only, either of the individual employee (Ark, Del, Neb, NH, NY, OK, VT), or of the employee and blood relatives (LA, Minn, Or, UT).
Paragraph (6). (Genetic monitoring) The definition of “genetic monitoring” is drawn from the description in Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace 4 (1990). The focus in monitoring is not on inherited characteristics, but on genetic alterations in a group of exposed individuals over time. Genetic monitoring is typically undertaken by employers to identify risks for groups of employees who have been exposed to hazardous substances or to target work sites for safety and health measures.
Paragraph (7). (Genetic service) “Genetic service” is a broader category than genetic testing. The term includes activities associated with obtaining genetic information that could create assumptions about genetics even in the absence of a genetic test or genetic information. “Counseling” implies a one-on-one consultation, so the definition also includes “genetic education” in order to capture group information sessions on genetic conditions. Members of the drafting committee have expressed concern, however, that “education” makes the definition too broad.
In contrast, some states take a narrower approach that is limited to protecting requests for genetic testing. For example, Rhode Island accomplishes this by including “request for genetic testing” within its definition of “genetic information.”
Paragraph (8). (Genetic test) One major concern is that the definitions in the act should be crafted so that they do not become obsolete or unintentionally limited by advances in science. See Henry T. Greely, Banning “Human Cloning:” A Study in the Difficulties of Defining Science, 8 S. Cal. Interdisciplinary L.J. 131 (1998). Therefore, the definition of genetic test is not phrased in terms of particular types of tests or specific substances that are used to provide information about a person’s genetic makeup, such as chromosomes or deoxyribonucleic acid (DNA), as these may change with scientific and medical developments.
“Human genetic material” is a general term that is understood to include DNA, ribonucleic acid (RNA), chromosomes, proteins, and metabolites that can detect or indicate information about an individual’s genotype. As scientific knowledge develops, this list may expand.
Some states statutes limit their definition of “genetic test” to testing for disease-related genes. (Ariz, Ark, Del, Ill, Iowa, Kan, LA, Maine, MD, Mich, Minn, Nev, MO, Neb, NJ, NM, NY, NC, OK, OR, RI, TX, VT, VA, WI). This draft follows the example of other states, including some with newly enacted or amended statutes, that do not limit the definition of genetic testing to genotypes associated with diseases or impairments. (Fla, Haw, Mass, NH, Ore, UT). While most of the reasons that an employer or insurer might currently seek or use genetic information probably involve a disease, disorder, or impairment, this may not always be the case. One can imagine, for example, that the presence or absence of behavioral traits might also be a criterion for selecting an employee. While the current evidence linking behavior to genes is tenuous, this area continues to be the subject of investigation. Moreover, a broad definition of “genetic test” would facilitate the eventual application of the statute to topics outside employment and insurance, if that is the direction the National Conference of Commissioners on Uniform State Laws takes. For example, provisions governing the retention of samples used for research or identification would involve testing that is not necessarily linked to disease.
Some of the state statutory definitions specifically include testing for the purpose of monitoring for genetic damage through workplace exposure. (Ariz, Ill, N.Mex). Rather than defining this as a “genetic test,” the draft treats this as a permitted reason for testing in section 203.
Paragraph (9). (Health insurance) The definition of “health insurance” is meant to be broad. Definitions and terms of art vary greatly among the states. This definition adopts the broad framework used in Ala. Code § 27-53-1(3), supplemented with terms for health care arrangements used in other states. The concept of a “health care arrangement in which risk is assumed” is drawn from Fla. Stat. § 627.4301.
Paragraph (10). (Insurer) The definition of “insurer” is intended to cover broadly insurance companies and other persons that issue health, life, disability income, or long-term care insurance and all persons who might obtain, use, or disclose genetic information associated with that process.
Paragraph (11). (Life insurance) “Life insurance” is intended to be defined broadly. This definition is drawn from N.H. Rev. Stat. § 401:1(III).
Paragraph (12). (Long-term care insurance) The definition of “long-term care insurance” is drawn from N.H. Rev. Stat. § 415-D:3(V). The definition could be made more complex. For example, the New Hampshire provision also excludes a list of basic health care, accident, and life insurance coverage. It further states that “any product advertised, marketed, or offered as long-term care insurance” is included in the definition.
Paragraph (13). (Person) This draft uses the broad version of the standard National Conference of Commissioners on Uniform State Laws definition of “person.”
Paragraph (14). (Predisposing genetic characteristic) The definitions in the draft are designed to allow tailoring of the scope of permitted uses of information. A “predisposing genetic characteristic” refers to an genotype that signals an increased risk of a certain disease or condition. The term does not include symptomatic diseases or conditions or genetic characteristics that are manifest in a disease, medical condition, or disability. The broader terms “genetic test” and “genetic information” include both predisposing and manifest genetic characteristics as well as genetic information that does not necessarily pertain to health.
While the terms “propensity” or “susceptibility” are often used, the actual manifestation of a disease or condition may depend on a complex chain of events and the degree to which risk is elevated may be quite small. “Predisposing genetic characteristic” is meant to signal a more tenuous connection between a genotype or marker and a physical manifestation.
Paragraph (15). (Record) The definition of “record” is the standard National Conference of Commissioners on Uniform State Laws definition.
Paragraph (16). (Sign) The definition of “sign” is the standard National Conference of Commissioners on Uniform State Laws definition.
EMPLOYMENT
SECTION 201. APPLICABILITY. This article applies to actions taken by an employer, employment agency, labor organization, or licensing association.
Reporter’s Notes
The article is meant to apply broadly in the employment setting although at this point the provisions refer only to employers and employees.
SECTION 202. EMPLOYER ACCESS TO GENETIC INFORMATION.
(a) Except as provided in subsections (c) and (d), an employer may obtain genetic information about an employee or an employee’s family member only if the employee volunteers the information to the employer. An employer may not inquire about an employee’s or an employee’s family member’s genetic information or request or require that this information be provided. If an employee volunteers genetic information from a source other than the employee, the employee shall provide informed consent for the disclosure to the employer. Informed consent shall be indicated by a record signed by the employee that includes a description of the genetic information to be disclosed, its potential uses, and the person to whom it may be disclosed.
(b) An employer may obtain information about whether an employee or an employee’s family member has accessed or refused a genetic service only if the employee volunteers the information to the employer. An employer may not inquire about an employee’s or an employee’s family member’s access or refusal of a genetic service and may not request or require that this information be provided.
(c) If an employer provides a genetic test as part of a genetic monitoring program, the employer may receive the genetic testing results in an aggregate form that does not disclose the identity of specific employees.
(d) An employer may obtain genetic information about an employee if:
(1) the employee has placed the employee’s health at issue in a court or administrative agency proceeding;
(2) the genetic information is relevant to a claim or defense in the proceeding;
and
(3) on a motion by the employer a court or administrative agency orders the employee to undergo genetic testing after finding that the employer has demonstrated compelling need and that the information is otherwise unavailable.
Reporter’s Notes
Employers get health information in a variety of ways including applications, interviews, references, post-offer medical exams, post-offer releases of medical records, Family and Medical Leave Act requests, worker’s compensation claims, health insurance claims to self-insured employers, and voluntary disclosures by employees. Many states have tried to limit employer access to genetic information. There are statutes that prohibit an employer from requiring, requesting or administering genetic testing, obtaining genetic information, making inquiries about genetic information, or some combination of these methods of accessing genetic information. (Conn, Del, Iowa, Kan, MD, Mass, Mich, Minn, Neb, Nev, NH, NY, OR, RI, Tex, UT, VT, VA, WA, WI).
One rationale for limiting employer access to genetic information is the view that an employee should be able to keep genetic information private. At least one state has a constitutional right of privacy that appears to be relevant to genetic information. (Alaska) Another rationale is to make genetic discrimination less likely for, unlike discrimination based on sex or race, an employer cannot discriminate on the basis of genetic characteristics unless it has access to genetic information.
Scholars have argued that a privacy rationale makes more sense for protecting genetic information in the employment context than an anti-discrimination rationale. Statutory protections based on anti-discrimination rationales are designed for socially-recognized groups that have been historically disadvantaged. Genetic variations do not fit especially well within this paradigm. See, e.g., Pauline T. Kim, Genetic Discrimination, Genetic Privacy: Rethinking Employee Protections for a Brave New Workplace, 96 NW U. L. Rev. 1497 (2002).
This draft of the act moves away from the approach used in statutes with an anti-discrimination emphasis. Rather than broadly prohibiting employer testing and access to genetic information subject to exceptions, the draft affirmatively permits access to genetic information under certain circumstances.
Subsection (a). The draft permits employers to access genetic information about an employee at the employee’s instigation only. This follows the approach of a number of states that restrict an employer’s ability to require or obtain genetic information. See, e.g., Conn. Stat. Ann. § 46a-60(11) (employer may not “request or require” genetic information from employee); Kan. Stat. Ann. § 44-1009(a)(9) (employer may not seek to obtain, obtain, or use testing information to distinguish employees or restrict a right or benefit); La. Rev. Stat. § 23:368 (employer may not “require, collect, or purchase” protected genetic information with respect to an employee); Md. Code Art. 49B § 16(a) (employer may not “request or require” genetic information as a condition for hiring or determining benefits); Mass. Gen. L. Art. 151B § 4(19) (unlawful to “collect, solicit or require disclosure of genetic information” as a condition of employment); Mich. Comp. Laws § 37.1202 (no employer may “directly or indirectly acquire or have access to” an employee’s or family member’s genetic information unless an individual provides it voluntarily); Minn. Stat. Ann. § 181.974(subd. 2) (employer may not “request, require, or collect” protected genetic information as a condition of employment); Neb. Rev. Stat. § 48-236 (employer may not require genetic information as a condition or employment or promotion); Utah Code Ann. § 26-45-103 (employer may not “access or otherwise take into consideration” private genetic information in connection with an employment decision); Wash. Rev. Code Ann. § 49.44.180 (unlawful to require employee to submit genetic information as condition of employment).
The draft’s approach is in contrast to that of anti-discrimination statutes, which typically allow employers to compel testing or require employees to provide genetic information under certain circumstances. Most of the states that rely on disability statutes to regulate genetic information follow the ADA, which permits an employer to test an applicant and access an applicant’s medical records after a conditional offer of employment. This approach opens the door broadly to genetic information. (California and Minnesota are exceptions. They have addressed this problem comprehensively by providing that employers may not have access to non-job related medical information at any time.) In addition, under the ADA and most state statutes modeled on it, an employer can obtain medical information about its employees if it has a reasonable belief that (1) the employee will be unable to perform the essential functions of his or her job due to the medical condition or (2) the employee will pose a direct threat to health or safety because of the medical condition. Similarly, states that have amended their employment discrimination statutes to include genetics usually follow the rubric of those statutes and permit genetic testing or collection of genetic information when it is relevant to “job-related qualifications” or justified by “business necessity.”
An important issue in employer access to genetic information is the conditions under which an employee consents to provide genetic information. Should employers be able to seek out genetic information by asking employees to permit testing or access to existing data? Statutes that permit employers to request genetic information appear to assume that an employee’s consent to an employer’s request is voluntary. It is possible, however, to argue that in the context of at-will employment, the need to retain one’s job may turn an employer’s request for genetic information into a demand that an employee dare not refuse. Thus some statutes prohibit even requests or inquiries. See, e.g., Mass. Gen. L. Art. 151B § 4(19) (unlawful to “question a person about their genetic information or genetic information concerning their family members”); Nev. Rev. Stat. § 613.345 (unlawful employment practice to “ask or encourage” an employee to submit to a genetic test). This draft follows that approach.
A more stringent level of protection could protect workers from ever providing genetic information or authorizing access, even on their own initiative. But a blanket prohibition on any disclosure arguably goes too far. It would prevent an employee from sharing information that could be used to protect the person from situations in which the employee is genetically susceptible to harm. In addition, it would make it easy to violate the act inadvertently by disclosing information an employee does not realize is genetic information. Instead, this draft follows a middle approach that permits employees to volunteer genetic information, but does not generally permit employers to require it.
The prohibition on employer inquiries is intended to apply to inquires directed to other persons as well as inquiries directed to the employee.
Subsection (b). A number of state statutes prohibit employers from accessing or using information about an employee’s request for or use of genetic services. See, e.g., La. Rev. Stat. § 23:368 (employer may not “require, collect, or purchase” information about an employee’s request for or use of genetic services); Maine Rev. Stat. Ann. § 19302 (employer may not discriminate on basis that an individual received a genetic test or genetic counseling except when based on a bona fide occupational qualification); N.C. Gen. Stat. Ann. § 95-28.1A (unlawful to deny employment of account of request for genetic testing or counseling services); Utah Code Ann. § 26-45-103 (employer may not inquire into whether an individual or blood relative has taken or refused to take a genetic test); Vt. Stat. Ann. § 9333 (employer may not use the fact that genetic counseling or tested services have been requested or performed). This allows employees to keep private information that could lead to discrimination based on assumptions about genetics, even in the absence of genetic information. If an individual is unable to keep private his use of genetic services such as counseling, he may be deterred from obtaining this service for fear that an employer or insurer will assume he has reason to think he has a genetic disorder.
Alternatively, this subsection could be combined with subsection (a). It is separated here for clarity of drafting.
Subsection (c). Genetic monitoring programs are typically undertaken by employers to identify risks for groups of employees who have been exposed to hazardous substances or to target work sites for safety and health measures. Monitoring is testing designed to detect whether the genetic material of a group of individuals has changed over time. The premise is that such changes could indicate increased risk of future illness. Aggregated data from tests for genetic damage is sufficient to allow an employer to reduce exposures to levels that do not affect individuals’ chromosome morphology or DNA. Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace 66 (1990). Moreover, while monitoring may have predictive value for a group, the techniques that are used do not currently measure increased individual health risks. The rationale for genetic monitoring programs is discussed in more depth in the Reporter’s notes to section 203.
Subsection (d). This draft provides for an employer to obtain an employee’s genetic information if the employee places his health at issue in a legal proceeding. But this right is limited in that it applies only if the employer has satisfied the burden of proof to show compelling need and that the information is otherwise unavailable. Only that portion of an employee’s genetic information that is relevant to a claim or defense may be provided.
The form of the subsection follows Utah’s statute, which authorizes genetic testing when the employee has placed his or her health at issue in a proceeding, but only by order of a court or administrative agency after finding compelling need and that the information is otherwise unavailable. These procedures are consistent with Rule 35 of the Federal Rules of Civil Procedure, which provides that a court may order a physical examination on motion for good cause shown. Other states have more narrowly authorized employer testing to investigate a worker’s compensation claim. (NH, NY).
SECTION 203. EMPLOYER-PROVIDED GENETIC TESTING.
(a) An employer may offer genetic testing and, with the prior informed consent of the employee, may provide a genetic test to an employee for one of the following purposes:
(1) determining an employee’s predisposing genetic characteristics that may create susceptibility to harm from a workplace substance;
(2) monitoring the effects of employees’ exposure to a harmful workplace substance as part of a genetic monitoring program;
(3) as part of a confidential preventative health program for employees.
(b) An employee may provide informed consent for a genetic test following genetic counseling concerning the test. Informed consent shall be indicated by a record signed by the employee that
(1) includes a description of the genetic test to be performed, its purpose, and its potential uses; and
(2) provides that the employee shall receive the result and genetic counseling about the result unless the employee directs otherwise.
(c) An employer shall provide a genetic test for an employee if a court or administrative agency orders the employee to provide genetic information under Section 202(d).
Reporter’s Notes
Genetic testing is a means by which an employer can access genetic information, but it can also be provided by employers who do not necessarily access individualized results of the testing. Therefore the draft separates provisions on employer access to genetic information, treated in Section 202, from the provisions in this section on genetic testing.
Some states broadly prohibit employers from subjecting employees to genetic testing. See, e.g., Iowa Code Ann. § 729.6 (employer may not “solicit, require, or administer” a genetic test as a condition of employment); Kan. Stat. Ann. § 44-1009(a)(9) (employer may not subject, directly or indirectly, any employee to any genetic screening or test); Md. Code Art. 49B § 16(a) (employer may not “request or require” genetic tests as a condition for hiring or determining benefits); Mass. Gen. L. Art. 151B § 4(19) (unlawful to “solicit submission to, require, or administer a genetic test” as a condition of employment); Mich. Comp. Laws § 37.1202 (no employer may require a genetic test as a condition of employment); Minn. Stat. Ann. § 181.974(subd. 2) (employer may not “administer a genetic test” as a condition of employment); Neb. Rev. Stat. § 48-236 (employer may not require a genetic test as a condition or employment or promotion); Nev. Rev. Stat. § 613.345 (unlawful employment practice to “require or administer” a genetic test as a condition of employment); N.H. Rev. Stat. § 141-H (may not “solicit, require, or administer” genetic testing as a condition of employment); RI Stat. § 28-6.7-1 (employer may not “request, require, or administer” a genetic test); Utah Code Ann. § 26-45-103 (employer may not “request or require” an individual or blood relative to submit to a genetic test in connection with an employment decision); Vt. Stat. Ann. § 9333 (may not require genetic testing as a condition of employment); Va. Code Ann. § 40.1-28.7-1 (employer may not “request, require, solicit, or administer” a genetic test as a condition of employment); Wash. Rev. Code Ann. § 49.44.180 (unlawful to require employee to submit to genetic screening as condition of employment); Wis. Stat. Ann. § 111.372 (employer may not “solicit, require, or administer” a genetic test as a condition of employment unless employee requests test).
This draft focuses instead on the situations in which it is permissible for an employer to offer or provide genetic testing without any necessary inference that the employer will have access to the testing results. An employer may “provide” testing through an outside medical organization or, if the employer has the capacity, it may do it in house.
Subsection (a)(1). Determining employee susceptibility to harm from exposure to workplace substances is one situation in which some states have permitted employers to test with the consent of the employee. Iowa, Louisiana, New Hampshire, New York, and Wisconsin all have nearly identical provisions that permit genetic testing of an employee to determine an employee’s susceptibility to toxic substances if the employee requests testing, provides informed consent, and the employer does not terminate the employee or take other adverse action as a result of testing. Iowa Code Ann. § 729.6(7); N.H. Rev. Stat. § 141-H:3; N.Y. Exec. Law § 296; Wis. Stat. Ann. § 111.372.
The utility of testing for susceptibility to workplace disclosures is illustrated by chronic beryllium disease. Beryllium is a lightweight metal used in many industries that poses the threat of this disease when dust or fumes are inhaled. Industry protections have greatly reduced exposure, but a small portion of the population can contract the disease even after a very brief exposure. A genetic marker has reportedly been identified for this extreme sensitivity that purports to show with certainty which individuals will contract beryllium disease and die from short exposure. Cynthia Nance, Paul Miller, & Mark Rothstein, Discrimination in Employment on the Basis of Genetics, 6 Employee Rights & Employment Policy Journal 57, 63-64 (2002). If so, testing could provide information that could define an individual’s risk from workplace exposure to beryllium.
The draft allows an employer to provide testing for such susceptibilities, but unless the employee volunteers the test results under section 202(a), the employer is not authorized to obtain them.
Subsection (a)(2). Monitoring for damage to employees’ genes from workplace exposure to harmful substances is another possible justification for testing. The states that permit an employer to screen for genetic susceptibility to harmful workplace substances also permit monitoring for exposure provided the employee requests testing, provides informed consent, and the employer does not terminate the employee or take other adverse action as a result of testing. Iowa Code Ann. § 729.6(7); N.H. Rev. Stat. § 141-H:3; N.Y. Exec. Law § 296; Wis. Stat. Ann. § 111.372. In addition, Louisiana authorizes monitoring of biological effects of toxic substances in the workplace if the employee has provided authorization and is notified of the results. La. Rev. Stat. § 23:368. More generally, the definitions and prohibitions in many state’s statutes do not appear to restrict monitoring for genetic damage, or are ambiguous on this issue.
Genetic damage is caused by mutagens, that is, substances that are capable of triggering change in the genetic material of a cell. Genetic damage appears in the form of recessive and dominant mutations, large rearrangements of DNA, point mutations, or loss of genetic material. Occupational exposure to harmful substances is more likely to cause damage to somatic cells than to germline cells that would lead to heritable damage. Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace 71 (1990).
Not all mutations cause disease and the relationship between exposure and health effects is not well understood. Mutagens are often, however, also carcinogens and so cancer is a common result of high exposure levels. But because of the long latency period of cancer it is difficult to establish causal relationships between a mutation and cancer. As a result, monitoring can only provide a gross indication that there have been genetic changes and that disease could follow. Despite this, measurements of genetic damage are used as indicators of exposure based on the rationale that the genetic changes are part of a process that may ultimately produce abnormal growth. Id. at 58, 71. There are multiple genetic tests for exposure to mutagens at both the chromosomal and molecular level.
The most common indicators of chromosomal (cytogenic) damage are chromosomal aberrations (CAs) and sister chromatid exchanges (SCEs). CAs are chromosomes with breakage or rearrangements. Id. at 62. CAs can be observed directly and, in addition, the previous existence of CAs is indicated by the presence of micronuclei, which result when fragments of chromosomes or whole chromosomes are excluded from nuclei formed during cell division. Id. at 64. CAs are thought to be associated with cancer because they are found in lymph disorders such as leukemia and in solid tumors, and some studies have found that cancer developed more frequently among individuals with CAs. Id. at 62, 63. CAs are more likely to be induced by ionizing radiation than chemical agents, but there are notable exceptions. For example, vinyl chloride exposure results in increased CAs and places workers at risk of developing a form of liver cancer. Workers exposed to benzene show elevated CAs and are at increased risk of leukemia. Id. at 65.
Sister chromatics are the two daughter strands of a duplicated chromosome. An exchange results when apparently equivalent sections of the sister chromatics of the same chromosome are switched during cell division. SCE is a sensitive marker for DNA damage and repair that results only from chemical mutagens, not from radiation. Id. at 63.
Based on over 100 studies of groups with occupational exposures, the following are the most common occupational hazards that produce cytogenic abnormalities: alkylating anticancer agents (CA, SCE), arsenic (CA), asbestos (CA, SCE), benzene (CA), benzidine (CA), bis(chloromethyl)ether (CA), cadmium/lead/zinc (CA), coal gasification (CA), coal tars (CA), coke products (SCE), diesel fumes (CA), dimethylformamide (CA), DDT (CA), epichlorohydrin (CA), ethylene oxide (CA, SCE), mineral oils (CA), nickel refining (CA), organophosphorous insecticides (CA, SCE), pentacholorophenol (CA, SCE), rubber industry (CA, SCE), shale oils (SCE), styrene (CA), sulphite (wood pulp) (CA), tricholoroethylene (CA, SCE), and vinyl chloride (CA, SCE). Id. at 65.
As of 1990, no occupational studies had directly connected chromosomal abnormalities to increased individual risk for disease. Thus, while CA and SCE monitoring may have predictive value for a group, it is not a reliable way to predict health risks for an individual. Id. at 66. Monitoring can, however, be used by employers to reduce exposures to known mutagens to a level that does not affect individuals’ chromosome morphology or DNA. Data on CAs are routinely used by regulatory agencies in the process of setting exposure standards for industry. Id.
At the molecular level, new techniques for documenting exposure to mutagens are being refined and hold the promise of more clearly explaining the relationship between mutations and disease. The most common molecular approaches to measuring mutagenesis include measuring the frequency of lymphocytes (T-cells) in which the HPRT gene has been inactivated by mutation; detecting DNA “adducts” (an alteration in which exogenous material is bound to DNA); determining DNA repair (which indicates excision damage); measuring the DNA content of cells to detect tumors (which contain cells with elevated levels of chromosomes); and detecting oncogenes (cancer-causing genes), which can be activated by damage such as translocations, breaks, and deletions of DNA. Id. at 66-69. There is a potential that detecting activated oncogenes and DNA adducts may provide a method for predicting disease in asymptomatic individuals. Id. at 71.
Subsection (a)(3). An employer that provides preventative health services to encourage a healthy workplace is not restricted from including genetic testing as part of those services. The test results would not be available to the employer unless the employee volunteers them under section 202(a).
Subsection (b). The requirements for informed consent for testing are placed in this section because they seem to be more substantive than definitional. In addition, the requirements differ slightly for consent to testing, retention of information, and disclosure.
Subsection (c). This subsection requires an employer to provide the genetic testing when a court has ordered that an employer may obtain genetic information relevant to a claim or defense in a legal proceeding under Section 202(d).
SECTION 204. EMPLOYER USE OF GENETIC INFORMATION.
(a) An employer may use genetic information obtained in compliance with Section 202 for the following:
(1) monitoring the effects of employees’ exposure to a harmful workplace substance as part of a genetic monitoring program;
(2) defending a court or administrative agency proceeding in which an employee has placed the employee’s health at issue; or
(3) protecting the health or safety of others in the workplace from a direct threat indicated by an employee’s genetic information.
(b) An employer may use genetic information obtained in compliance with Section 202 about an employee’s predisposing genetic characteristic that may create susceptibility to harm from a workplace substance to reduce an employee’s exposure to that substance, except that an employer may not terminate an employee or take an adverse employment action based on this genetic information.
Reporter’s Notes
Many state statutes prohibit discrimination among employees or applicants for employment on the basis of genetic information. (Ark, Ill, Kan, LA, Maine, MD, Mass, Mich, MO, Neb, Nev, NJ, NY, NC, OK, OR, RI, SD, Tex). Others more generally ban the use of genetic information in employment. For example, New Mexico’s 2005 statute provides simply that “[i]t is unlawful for a person to use genetic information in employment, . . .” In Utah, employers may not take into account genetic information about an individual in connection with an employment decision. Wisconsin and Minnesota prohibit “adverse employment actions” based on genetic information. In Iowa, an employer may not use genetic information to “affect the terms, conditions, or privileges of employment” of a person who gets a genetic test. Iowa Code Ann. § 729.6(2).
Some states make exceptions to their discrimination prohibition for business necessity, bona fide occupational qualifications (BFOQs) or inability to preform job duties. These are primarily states that use disability or employment discrimination statutes as a vehicle for their regulation of genetics in the workplace, but other states have made this exception as well. (Cal, Hawaii, Maine, Mass, Mich, MO, Neb, NY). In addition, the ADA permits adverse employment decisions against individuals with disabilities when employee safety is endangered. Some states have restricted this exception when it is based on genetic information to the circumstance where an employee voluntarily provides the genetic information. (Mich, Neb).
Instead of imposing a prohibition with exceptions that permit some use of genetic information, the draft selectively authorizes ways that an employer may use genetic information in employment decisions about individual employees.
Subsection (a). Permitting an employer to use genetic information for a monitoring program or defending a legal proceeding is consistent with the purposes for which an employer may obtain genetic information under section 202. Subsection (a)(3) would permit an employer to act on genetic information provided voluntarily by an employee when there is a direct threat to the health or safety of others in the workplace. This provision is consistent with the ADA, which allows such action even in the case of a disability. 42 U.S.C. § 12113(b).
Subsection (b). Once an employee has volunteered genetic information about susceptibility to workplace exposures to the employer, the question becomes the permissible use of the data. To what extent should an employer be able to make employment decisions to prevent potentially harmful employee exposure based on the information obtained from testing?
The way federal statutes would be applied to this genetic information has not been directly tested in court and is not entirely clear. On one hand, in 1991 the United States Supreme Court held that a chemical company’s policy barring women of child-bearing age from employment opportunities that involved exposure to lead violated Title VII prohibitions on gender discrimination. International Union v. Johnson Controls, 499 U.S. 187 (1991). On the other hand, as discussed above, the ADA allows employers to act on health information, even in the case of disability, when there is a direct threat to the health or safety of others in the workplace. In a case that did not involve a genetic characteristic but rather a worker’s liver damage due to exposure to workplace solvents, the United States Supreme Court upheld the Equal Employment Opportunity Commission’s (EEOC’s) regulation interpreting this ADA provision to apply when there is no risk to others but when an employer can show that an individual’s disability poses a significant risk of harm to the individual. Chevron v. Echazabal, 122 S. Ct. 2045 (2002). The implication of this case is that without specific state statutes, an employer may make adverse employment decisions based on genetic screening or monitoring requested by an employee.
The current draft follows the lead of the states that permit genetic testing to determine susceptibility only when an employer does not use the information to terminate or take other adverse action against the employee. Iowa Code Ann. § 729.6(7); N.H. Rev. Stat. § 141-H:3; N.Y. Exec. Law § 296; Wis. Stat. Ann. § 111.372.
The Brush-Wellman company in Cleveland, Ohio, provides a model for the way in which a company could be permitted to use screening or monitoring information. Brush-Wellman conducts genetic tests for its employees who work with beryllium, but the testing is voluntary and confidential. Moreover, the test results are provided to the employee, who makes the decision on what action to take. The company takes no action against the employee as a result of the genetic testing. Cynthia Nance, Paul Miller, & Mark Rothstein, Discrimination in Employment on the Basis of Genetics, 6 Employee Rights & Employment Policy Journal 57, 64-65 (2002).
An argument can be made that permissible uses for genetic information as defined in this draft are too narrow in that they could be interpreted to exclude decisions an employer might make based on an individual’s current medical condition. See, e.g., Henry T. Greely, Genotype Discrimination: The Complex Case for Some Legislative Protection, 149 U. Pa. L. Rev. 1483, 1503 (2001). An alternative would be to rely on existing law for protection of individuals with genetic diseases that have become manifest and to frame the permissible uses of genetic information in terms of predictive information using the concept of “predisposing genetic characteristic.”
SECTION 205. EMPLOYEE ACCESS TO GENETIC INFORMATION.
(a) An employer that provides genetic testing under this article shall report or require reporting of the results to the employee and a health care professional designated by the employee unless otherwise requested by the employee.
(b) An employee may inspect, request correction of, or obtain genetic information from an employer’s records on the employee.
Reporter’s Notes
Subsection (a). This subsection provides for reporting genetic test results to the employee when an employer provides testing. This reporting obligation is incurred whether or not the employer may obtain the test results under Section 202. There needs to be sensitivity, however, to the fact that not all individuals wish to know their genetic information. So the draft leaves the decision to the employee.
The draft provides for reporting to a health care professional so that the results can be interpreted for the employee. But because the scope of the drafting committee’s mandate is limited to use of genetic information in employment and insurance, the draft does not consider standards for genetic counseling that should be associated with disclosures to an employee who has been tested.
Subsection (b). This section is based on the conclusion that an employee ought to be able to find out what genetic information an employer knows about an employee and to have the same information. It is based on 16 Del. Code § 1223.
SECTION 206. EMPLOYER RETENTION OF GENETIC INFORMATION.
(a) An employer shall require that a sample obtained for genetic testing supplied by an employer shall be destroyed promptly following the completion of the testing unless retention is authorized by order of a court or administrative agency.
(b) An employer may retain genetic information about genetic monitoring that does not disclose the identity of the employee.
(c) An employer may retain a record of an employee’s informed consent for the employer to obtain genetic information, for the employer to provide genetic testing, for the employer to retain genetic information, or for the employer to disclose genetic information. The employer shall treat a record of informed consent as a confidential medical record and store it separately from the employee’s personnel records.
(d) An employer may retain genetic information or information about a request for or receipt of genetic services that identifies the employee only with prior informed consent of the employee. The employer shall treat this information as a confidential medical record and store it separately from the employee’s personnel records.
(e) Informed consent for retention of genetic information is indicated by a record signed by the employee that includes a description of the genetic information to be retained, its potential uses, limitations on its use, and the person who shall retain it, and the length of time it may be retained. An employee may revoke consent made under this subsection at any time.
Reporter’s Notes
Subsection (a). The provision for prompt destruction of a sample obtained for genetic testing provided by an employer follows provisions adopted in New Jersey and Oregon. Alternative approaches include a requirement that the sample be destroyed promptly on the request of the individual tested or that a sample may be retained for a period of time. In New York, a sample may be retained for ten years if authorized by the individual from whom the sample was obtained.
Subsections (b)-(c). An employer may retain some information without an employee’s specific informed consent. An employer may need to retain the genetic information in order to make a monitoring program effective. Since an employer is allowed access to this information only in a form that does not identify individual employees, retention of monitoring information should not affect an employee’s privacy. An employer may also retain records of an employee’s informed consent with regard to employer access to genetic information, genetic testing, retention of information, or disclosure of information.
Subsection (d). If an employer obtains an employee’s individually-identifiable genetic information pursuant to Section 202, it needs informed consent to retain that information. The separate storage requirement serves to protect the employee’s privacy and is modeled on La. Rev. Stat. § 23:368(B).
SECTION 207. EMPLOYER DISCLOSURE OF GENETIC INFORMATION.
(a) An employer may disclose an employee’s genetic information to a person other than the employee only if the employer has obtained the employee’s informed consent before the disclosure is made.
(b) Informed consent for disclosure of genetic information is indicated by a record signed by the employee that includes a description of the genetic information to be disclosed, its potential uses, limitations on its use, and the person to whom it may be disclosed.
Reporter’s Notes
The draft is consistent with a number of states that have established general privacy protections for genetic information that prohibit disclosure without informed consent (Alaska, Cal, Del, Fla, Maine, Mass, Nev, NH, NJ, NMex, NY, OR) or that protect specifically against the disclosure of genetic information by employers (Ariz, Fla, LA, Mass, NH, NJ, Or, RI).
SECTION 208. REMEDIES AND ENFORCEMENT.
(a) An individual who claims a violation of this article may file a civil action for back pay, reassignment, reinstatement, compensatory damages, or injunctive relief. A court shall award a prevailing plaintiff costs and reasonable attorneys fees unless justice requires otherwise.
(b) Instead of the remedy available under subsection (a) of this section, an individual who claims harm from an employment decision made in violation of this article may file a claim with the [state civil rights agency].
Reporter’s Notes
Most states require that employees submit claims of unlawful employment discrimination to a state agency or the federal Equal Opportunity Employment Commission. States otherwise rely on a mixture of administrative and civil processes, although a few have enacted criminal penalties.
Using a state employment discrimination agency may make sense for enforcement of provisions related to employment decisions because such agencies already have the apparatus in place to enforce state civil rights and disability statutes. For privacy violations, however, such agencies do not have expertise in controlling the flow of information and the typical remedies for employment discrimination are not necessarily appropriate for a privacy violation. Enforcement could be turned over to an agency with that expertise, but the drafters wish to avoid the cost of creating and funding a new agency.
The draft provides alternative enforcement routes. An aggrieved individual may elect to file a claim with the state civil rights agency, but is not obligated to wait for a right to sue letter in order to file a civil action.
Fee shifting is included to compensate prevailing plaintiffs for their costs to enforce the statute. A privacy rights perspective assumes an intrinsic harm from the invasion of privacy, whether or not consequential damages are incurred. Because of difficulties in measuring damage to privacy interests, statutory damages might be appropriate. Several states that provide a private right of action for privacy violations also specify statutory damages, with higher amounts when the violation is willful or leads to monetary gain for the violator. Alaska Stat. § 18.13.020 (actual damages plus $5,000 or $1,000 if monetary gain); N.H. Rev. Stat. § 141-H:6 (not less than $1,000 per violation); NM Stat. Ann. § 24-21-6 (economic loss plus damages of up to $5,000 if the violation results from willful or grossly negligent conduct).
HEALTH INSURANCE
(a) This article applies to health insurance issued on an individual, group, or other basis.
(b) This article applies to employee welfare plans in the absence of a controlling judicial decision that it is preempted by the Employee Retirement Income Security Act of 1974, 29 U.S.C. § 1001 et seq.
Reporter’s Notes
Subsection (a). The draft is meant to apply broadly to health insurance, and this section closes the gaps left by HIPAA because it applies only to small group and individual coverage. In addition to individual and group health insurance policies, some state statutes reference health insurance issued on a franchise or blanket basis.
This article is not intended to apply to accident-only insurance, automobile medical payment insurance, credit insurance, disability income insurance, life insurance, long-term care insurance, worker’s compensation insurance, or coverage issued as a supplement to liability insurance.
Subsection (b). Federal preemption is relevant because the United States Supreme Court has held that ERISA, 29 U.S.C. § 1001 et seq., applies to employee benefit plans such as health insurance as well as to pension plans. Inter-Modal Rail Employees Ass'n v. Atchison, Topeka and Santa Fe Ry. Co., 520 U.S. 510 (1997). The United States Supreme Court has recognized three types of preemption under ERISA that are relevant to this draft act: express, complete, and conflict preemption.
In order to simplify the administration of plans by ensuring that they are subject to only one set of regulations, ERISA expressly preempts state regulation of the administration of employee benefit plans to the extent those regulations “relate to” employee benefit plans. 29 U.S.C. § 1144(a). The statute contains a savings clause, however, that saves laws that regulate insurance from ERISA preemption. 29 U.S.C. § 1144(b)(2)(A). The issue of whether state regulations are preempted by ERISA has led to extensive litigation.
Recently, the United States Supreme Court clarified the application of the savings clause. In order to fall under ERISA’s savings clause, a state law must first be “specifically directed toward” the insurance industry. Kentucky Ass'n of Health Plans, Inc. v. Miller, 123 S. Ct. 1471, 1475 (2003). Laws of general application that merely have “some bearing on insurers” do not fall under the clause. Id. Second, the ERISA provision saves state laws that regulate “insurance,” not “insurers,” so a law must regulate insurers “with respect to their insurance practices.” Id. A state law regulates an insurer with respect to insurance practices if it controls the terms of insurance policies, id. at 1476, or if it “substantially affect[s] the risk pooling arrangement between the insurer and the insured,” id. at 1477.
The preemption question is further complicated by that fact that ERISA also contains what is referred to as the “deemer clause,” which creates an exception to the savings clause. It provides that “neither an employee benefit plan . . . nor any trust established under such plan, shall be deemed to be an insurance company or other insurer . . . for purposes of any law of any State purporting to regulate insurance companies . . . .” 29 U.S.C. § 1144(b)(2)(B). The United States Supreme Court has interpreted the deemer clause to exempt self-funded (i.e. uninsured) health plans from the savings clause. Thus the Court concluded that “self-funded ERISA plans are exempt from state regulation insofar as that regulation ‘relate[s] to’ the plans.” FMC Corp. v. Holliday, 498 U.S. 52, 61 (1990).
FCM Corp. and its distinction between insured and self-insured health plans has not been overruled and continues to be applied by lower courts. See, e.g., Daly v. Marriott International, Inc., 415 F.3d 889 (8th Cir. 2005) (“deemer clause” of ERISA preemption provision exempted employer funded health plan from application of state mental-health parity law); Blue Cross Blue Shield of Alabama v. Sanders, 138 F.3d 1347 (11th Cir. 1998).
The second type of ERISA preemption may affect the draft’s enforcement provisions. “Complete preemption” occurs when Congress has “so completely [preempted] a particular area that any civil complaint raising this select group of claims is necessarily federal in character.” Metropolitan Life Ins. Corp. v. Taylor, 481 U.S. 58, 63-64 (1987). In Taylor, the United States Supreme Court held that the civil enforcement provision of ERISA, 29 U.S.C. § 1132(a), completely preempts common law breach of contract and tort claims for wrongful termination of disability benefits. See also Prudential Ins. Co. of Amer. v. Nat’l Park Med. Center, Inc., 413 F.3d 897 (8th Cir. 2005) (with respect to suits that could be brought under ERISA, civil enforcement provision preempts Arkansas Patient Protection Act civil penalties).
Third, “conflict preemption” also comes into play with civil remedies. The United States Supreme Court has held that Congress intended to make the ERISA civil enforcement remedy exclusive and that therefore a state-law cause of action that “duplicates, supplements, or supplants” the ERISA civil remedy conflicts with congressional intent. Aetna Health, Inc. v. Davila, 452 U.S. 200, 208 (2004) (Texas statute that created a cause of action against HMOs for failure to exercise ordinary care in handling coverage decisions preempted). See also Hawaii Management Alliance v. Ins. Comm’n, 100 P.3d 952 (Haw. 2004) (statute providing attorney’s fees and costs for external review of insurer’s denial of coverage preempted by conflict with ERISA).
SECTION 302. HEALTH INSURER ACCESS TO GENETIC INFORMATION.
(a) An insurer that receives a claim for payment under a health insurance policy may request:
(1) information regarding the need for a genetic test, but not the results of the test, when the service rendered is a genetic test or genetic counseling;
(2) the portion of genetic information necessary to determine the insurer’s obligation to pay for health care services when the reason for rendering the services is a genetic disorder or predisposing genetic characteristic.
(b) In determining eligibility for health insurance coverage and in setting rates, terms, and conditions for a health insurance policy, an insurer may not:
(1) request an individual’s genetic information; or
(2) inquire whether an individual or an individual’s family member has taken or refused to take a genetic test.
Reporter’s Notes
Subsection (a). This subsection highlights the potential role for genetic information in providing payment for genetic tests and health care services. First, genetic information such as family history may be necessary for preauthorization for a genetic test or service or for approval of payment for a genetic test or service. Second, health care services may be medically justified by a predisposing genetic characteristic or a genetic condition. In this context, genetic “disorder” should be interpreted broadly to include the full range of health effects influenced by a genotype, including a disease or condition.
This subsection is modeled on a Utah provision.
Subsection (b). This subsection prohibits a health insurer from obtaining genetic information for the uses prohibited in Section 304.
(a) Following genetic counseling, a health insurer may provide a genetic test for therapeutic purposes with the informed consent of the individual tested or the individual’s representative before the genetic test is provided.
(b) Informed consent shall be indicated by a record signed by the individual to be tested or the individual’s representative that includes a description of the genetic test to be performed, its purpose, its potential uses, and provides that the individual shall receive the result and genetic counseling about the result unless the individual directs otherwise.
Reporter’s Notes
This Section follows the privacy protections of states that require informed consent for most genetic testing. (E.g., Alaska, Arizona, Delaware, Florida, Mass, Nevada, NH, NJ, NMex, NY OR, SD.)
The draft does not disturb existing law that allows a minor to seek repudiation of consent and expunge records when the minor reaches the age of majority.
SECTION 304. HEALTH INSURER USE OF GENETIC INFORMATION.
(a) A health insurer may use an individual’s genetic information for therapeutic purposes for the individual.
(b) An insurer that receives a claim for payment under a health insurance policy may use information requested under section 302(a) for purposes of determining a payment obligation.
(c) An insurer may not consider an individual’s genetic information in determining eligibility for health insurance coverage or in setting rates, terms, and conditions for a health insurance policy.
Reporter’s Notes
This section reflects and combines the approaches of many states that prohibit the use of genetic information for setting eligibility requirements and for underwriting in health insurance. It partially closes the gaps left by HIPPA in that it extends beyond merely prohibiting complete denial of coverage; the section also prohibits use of genetic information in determining rates terms and conditions.
A determination of eligibility for coverage is meant to include decisions made in connection with the offer, sale, continuation, or renewal of a health insurance policy. A determination of rates, terms, and conditions includes establishing premiums, limiting coverage, limiting or conditioning benefits, or making any other underwriting decisions. The prohibition on using genetic information for these purposes also precludes an insurer from treating a predisposing genetic characteristic as a preexisting condition for purposes of limiting or excluding benefits or coverage. This is consistent with statutes in several states that do not permit health insurers to impose preexisting condition exclusions based on predictive genetic information in the absence of a diagnosis based on symptoms of the disease or condition. (Alaska, Conn, Idaho, Iowa, Ky, OR).
There are many alternative approaches to regulating the use of genetic information in health insurance. Some other states take an approach like that of HIPPA and use a non-discrimination provision that prohibits higher premiums than those charged to similarly situated individuals. (Alaska, Ark, Ill, Iowa). Yet other states prohibit the use of genetic information for underwriting health insurance without actuarial justification. (Ariz, WVa). In some states, use of genetic information for risk selection is permitted if an individual submits the information voluntarily or if the information is favorable to the individual. (Ill, Ind, Mass, Mo, NY). Yet other states regulate this use by prohibiting insurers from increasing policy rates based on genetic information. (Md, Mont, Or, Tex).
This section illustrates some of the problems with treating genetic information as a distinct category of medical information. First, the section offers less protection than HIPPA in terms of eligibility decisions for individual and small group coverage because it regulates use of genetic information only, not information on all medical conditions. Second, it is often permissible for insurers to consider existing medical conditions in determining coverage and premiums under other law so long as they treat like situations alike. This section would impose a different standard with regard to conditions predicted by genetic information, thus raising the practical question of which conditions are “genetic.” Even conditions with a genetic component are rarely entirely “genetic.”
The prohibition on considering an individual’s genetic information in this section is consistent with the draft’s policy treatment of use of information in the employment context. However, again an argument can be made that protection for genetic information as defined in this draft is too wide. As discussed above, the prohibition would create a different standard for genetic illnesses than for other medical conditions. Many think that this would place too great a burden on insurers. See, e.g., Henry T. Greely, Genotype Discrimination: The Complex Case for Some Legislative Protection, 149 U. Pa. L. Rev. 1483, 1503 (2001). An alternative would be to limit the restrictions to predictive information by substituting “predisposing genetic characteristic” for “genetic information” in subsection (b).
SECTION 305. HEALTH INSURER RETENTION OF GENETIC INFORMATION. An insurer that retains genetic information shall comply with the terms of the Health Insurance Portability and Accountability Act of 1996 as if the information is covered by that Act.
Reporter’s Notes
This section extends the protections of HIPAA to all genetic information retained by health insurers, whether covered by HIPPA or not.
SECTION 306. HEALTH INSURER DISCLOSURE OF GENETIC INFORMATION.
(a) A health insurer may disclose an individual’s genetic information to a person other than the individual if it has obtained the individual’s informed consent.
(b) Informed consent for disclosure of genetic information shall be indicated by a record signed by the individual that includes a description of the genetic information to be disclosed, its potential uses, limitations on its use, and the person to whom it may be disclosed.
Reporter’s Notes
This section conditions the disclosure of an individual’s genetic information on the informed consent of the individual. An important issue to consider is whether there are circumstances in which disclosures should be made absent such consent. In some jurisdictions, health care providers may have a common-law duty to inform others of a genetic disorder.
New Jersey’s court has recognized a physician’s duty to warn those “known to be at risk of avoidable harm from a genetically transmissible condition.” Safer v. Pack, 677 A.2d 1188 (N.J. Super. Ct. App. Div. 1996). The defendant in the case was the physician who had treated the plaintiff’s father for colorectal cancer that led to the father’s death when the plaintiff was a child. The plaintiff inherited multiple polyposis, an inherited condition that if undiscovered and untreated, leads to metastatic colorectal cancer. The court found a duty to “take reasonable steps” to warn that “extends beyond the patient to members of the immediate family of the patient who may be adversely affected by a breach of that duty.” It noted, but did not determine, the issue that would arise if the father had instructed the doctor not to disclose details of the illness or the genetic risk. In that event, it would be necessary to resolve the conflict between physician-patient confidentiality and the duty to warn.
Minnesota has also recognized a duty regarding genetic testing and diagnosis that reaches beyond the patient. The plaintiff alleged that her daughter’s physicians were negligent in failing to diagnose a genetic disorder in the daughter that led the mother to conceive another child with the same genetic disorder. Molloy v. Meier, 679 N.W.2d 711 (Minn. 2004). The court noted that genetic testing and diagnosis affect not only the patient, but can benefit or harm both the patient and her family. The Fragile X disorder is one that physicians ordinarily report to parents and it was foreseeable that a negligent diagnosis of the disorder would cause harm to the family as well as the patient. The court held that the duty to warn extends to “biological parents who foreseeably may be harmed by a breach of that duty.” It did not consider whether it should extend to additional family members.
In contrast, the Florida Supreme Court has held that a duty to warn of the likelihood that a condition was inherited by a patient’s children is satisfied by warning the patient. Pate v. Threlkel, 661 So.2d 278 (Fla. 1995). The court observed that a patient can normally be relied upon to pass on the warning and emphasized the heavy burden that would be entailed in seeking out and warning family members.
Because the scope of the drafting committee’s mandate is limited to use of genetic information in employment and insurance, the draft does not consider standards for genetic counseling that should be associated with disclosures to an individual who has been tested or to family members.
SECTION 307. ENFORCEMENT AND REMEDIES.
(a) On or before two years of the date of the occurrence of an alleged violation of this article, an aggrieved individual may file a civil action or a claim with the [State Commissioner of Insurance], which may seek all available remedies, including those provided under this Act.
(b) A civil action for a violation of this article may seek compensatory damages or injunctive relief, including expungement of records. A court shall award a prevailing plaintiff costs and reasonable attorneys fees unless justice requires otherwise.
Reporter’s Notes
Many state statutes that prohibit discrimination in health insurance based on genetic testing or information declare that a violation is an unfair and deceptive insurance act or practice under the state insurance code. They often provide that the State Commissioner of Insurance shall enforce the prohibitions.
This draft reaches more broadly than discrimination in insurance and provides a private right of action for an individual whose genetic information is misused. Alternatively, an aggrieved individual may seek enforcement through the State Commissioner of Insurance.
LIFE, DISABILITY INCOME, AND LONG-TERM CARE INSURANCE
SECTION 401. APPLICABILITY. This article applies to life insurance, disability income insurance, and long-term care insurance issued on an individual, group, or other basis.
Reporter’s Notes
This draft includes a broad applicability provision that includes individual insurance as well as group-based insurance. Regulation of the use of information for individual insurance policies is a major issue because individual policies are subject to underwriting. Life, disability income and long-term care insurance can be distinguished from health insurance in that a greater proportion of the market consists of individual policies rather than group coverage. According to the National Conference of State Legislatures, approximately 60 percent of life insurance, 40 percent of disability income insurance, and almost all of long-term care insurance is underwritten individually, compared to only about 10 percent of health insurance. Individual underwriting decisions are based on an individual’s characteristics rather than broader group characteristics, so there would be more value in knowing individual genetic information if it could accurately predict the likelihood of claims.
The draft does not distinguish between individual and group insurance because most of the states that regulate the use of genetic information or testing for life, disability income, or long-term care insurance treat both categories identically.
SECTION 402. INSURER ACCESS TO GENETIC INFORMATION.
(a) An insurer may not require an applicant for insurance or an applicant’s family member to take a genetic test as a condition of the issuance or renewal of a policy for life insurance, disability income insurance, or long-term care insurance.
(b) An insurer may ask on an application for insurance whether or not an applicant has taken a genetic test. The applicant is not required to answer any questions concerning genetic testing or genetic information. An application requesting this information must inform the applicant that the applicant is not required to answer any question in connection with genetic testing or information.
(c) An application for life insurance must provide notice to the applicant if failure to answer questions concerning genetic information of testing may result in an increased rate or denial of coverage.
Reporter’s Notes
The argument for restricting access to genetic information is that its predictive power is easily exaggerated and insurers may force applicants to take genetic tests and then deny insurance or charge more based on genetic characteristics. This raises the possibility that a large class of people will lack coverage even though they are not sick. On the other side, as with health insurance, insurers worry about adverse selection. If applicants seek coverage because a genetic characteristic exposes them to risk, but the insurer does not have this information, this puts the insurer at a financial disadvantage. See generally Mark A. Rothstein, ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (2004).
A 1997 study by the Human Genetics Advisory Commission in the United Kingdom concluded that it is unlikely that actuarially-sound genetic predictions of adult death will be validated and available anytime in the near future. Genetic tests need to be connected to medical and epidemiological research to establish what consequences for health and life-span can be inferred from a given genetic test. The Commission concluded that a requirement to disclose genetic tests as a condition of obtaining insurance would be acceptable only after research has established an association between a given pattern of test results and life events that are relevant for the insurance product. It recommended continuing a moratorium on requiring test results and predicted that the life insurance industry could withstand the limited adverse selection that might result from non-disclosure. Human Genetics Advisory Commission, The Implications of Genetic Testing for Insurance (1997).
Subsection (a). Many of the states that regulate genetic testing in the context of life insurance, disability income insurance, and long-term care insurance prohibit insurers from requiring genetic tests for one or more of these categories of insurance. Cal. Ins. Code § 10233.1 (long-term care insurance); Colo. Rev. Stat. Ann. § 10-3-1104.7 (group disability and long-term care insurance); Kan. Stat. Ann. § 40-2259 (disability and long-term care insurance); Mass. Gen. L. Ann. 175 § 120E (life insurance); Mass. Gen. L. Ann. 175 § 108I (disability and long-term care insurance); Mich. Comp. L. Ann. § 500.3407b (disability insurance); Vt. Stat. Ann. § 9334 (any insurance). This draft is drawn from these examples.
Alternatively, some states do not prohibit testing, but restrict it in other ways for particular types of insurance. In California, for example, insurers may not require applicants for life or disability income insurance to take a genetic test for a pre-disposing characteristic unless the policy is contingent on review or testing for other diseases or medical conditions. Cal. Ins. Code § 10148.
Subsection (b). This provision is included for the drafting committee to consider the extent to which an insurance company should have access to genetic information or the results of genetic testing through means other than requiring a test. In the current draft, genetic information may be used by a life insurance company under certain circumstances, but only if submitted by the applicant. This provision permits applicants to maintain the privacy of their genetic information. It is adapted from the Massachusetts Act on Insurance and Genetic Testing and Privacy Protection. Mass. Gen. L. Ann. 175 § 120E (life insurance); Mass. Gen. L. Ann. 175 § 108I (disability and long-term care insurance).
SECTION 403. INSURER USE OF GENETIC INFORMATION.
(a) Except as provided in subsections (c) and (d), an insurer may use information about an applicant’s symptomatic genetic disorder to determine eligibility or rates, terms, and conditions for life, disability income, and long-term care insurance unless otherwise prohibited by law.
(b) An insurer may use genetic information about an individual’s predisposing genetic characteristics in determining eligibility, or rates, terms, and conditions for life insurance coverage if:
(1) an applicant for insurance submits the genetic information to an insurer; and
(2) the applicant’s medical condition and history and the insurer’s claims experience or actuarial projections establish that substantial differences in claims are likely to result from the applicant’s predisposing genetic characteristics.
(c) If the individual who determines the actuarial projection is a qualified geneticist or genetic counselor, the determination is presumed correct.
(d) An insurer may not determine eligibility for insurance coverage or affect rates, terms and conditions of life, disability income, and long-term care insurance based on the results of a genetic test of a family member.
(e) An insurer may not use favorable genetic information to induce a purchase of life, disability income, and long-term care insurance.
Reporter’s Notes
The extent to which states regulate the use of genetic information in life, disability income, and long-term care insurance varies. The draft makes a distinction between an existing disorder with a genetic cause or contribution (subsection (a)) and predisposing genetic characteristics that are not symptomatic (subsection (b)). The term “disorder” includes the concepts of disease or condition and should be interpreted broadly.
The determination of eligibility for coverage includes decisions made in connection with the offer, sale, continuation, or renewal of an insurance policy. The determination of rates, terms, and conditions includes establishing premiums, limiting coverage, limiting or conditioning benefits, or making any other underwriting decisions.
Subsection (a). This subsection permits an insurer to use information about phenotypic symptoms that indicate a disorder. This is distinguished from using predictive genetic information, which is covered in subsection (b).
Some of these states that require actuarial justification apply this requirement to the use of genetic tests or information about a predisposing genetic characteristic, but do not condition availability of insurance or prohibit underwriting based on a diagnosed genetic disease or condition. E.g., Cal. Ins. Code § 10147(b); Kan. Stat. Ann. § 2259; Md. Code Ann. Ins. § 27-208. Others are more restrictive and use definitions that appear to prohibit underwriting on either grounds. E.g., 24-A Maine Rev. Stat. § 2159-C (no discrimination on the basis of “genetic information,” which includes family history); Vt. Stat. Ann. § 9331(7) (“genetic testing” can be diagnostic or predictive). Arizona takes an intermediate position. It does not permit underwriting for disability income insurance based on a predisposing genetic characteristic, although underwriting based on actuarial projections are acceptable for diagnosed genetic conditions. Underwriting life insurance appears to be permitted on both grounds. Ariz. Rev. Stat. § 20-448.
Subsection (b). This subsection regulates insurers’ use of information on an individual’s predisposing genetic characteristics to predict risk.
Many states require an actuarial justification for using results of genetic tests to deny coverage or in underwriting for one or more of the types of coverage in regulated in this article. E.g., Ariz. Rev. Stat. § 20-448 (life and disability income insurance); Cal. Ins. Code § 10148 (life and disability income insurance); Kan. Stat. Ann. § 2259 (life); 24-A Maine Rev. Stat. § 2159-C (life, disability income, and long-term care insurance); Md. Code Ann. Ins. § 27-208 (life insurance); Mass. Gen. L. Ann. 175 §§ 120E, 108I (life, disability income, and long-term care insurance); Mont. Code Ann. § 33-18-206 (life and disability income insurance); 8 N.M. Stat. Ann. § 24-21-4 (life, disability income, and long-term care insurance); N.J. Stat. Ann. § 17B:30-12(f) (life and disability income insurance); Vt. Stat. Ann. § 4724(7)(D) (life, disability income, and long-term care insurance).
Some states place greater restrictions on the use of genetic information for disability income or long-term care insurance. In Colorado, an insurer may not use information from genetic testing for underwriting group disability or long-term care insurance. Colo. Rev. Stat. § 10-3-1104.7(3)(b). In Kansas, the availability of disability income and long-term care insurance may not be conditioned on getting a genetic test or on the results of the test. Similarly, testing and test results may not be considered in underwriting. Kan. Stat. Ann. § 2259.
For life insurance, this draft requires an actuarial justification for the use of information on predisposing genetic characteristics. Genetic diseases or conditions for which an applicant is symptomatic are not subject to this requirement under subsection (a). The draft differentiates disability income and long-term care insurance from life insurance, adopting the more restrictive Colorado and Kansas approach by not authorizing use of predisposing characteristics for underwriting.
Subsection (c). This provision addresses concerns about misinterpretation of genetic testing results by persons without adequate training in genetics. It does not require that actuarial projections are made by a person with genetic training, but provides a presumption of correctness if they are. This presumes that there is some means to challenge an actuarial determination made by a life insurance company.
Subsection (d). This provision excludes genetic testing of family members as a basis for life, disability income, and long-term care insurance decisions. It is based on an Oregon provision that prohibits insurers from using genetic test results for a blood relative to deny insurance coverage, increase rates, or affect terms and conditions. Or. Rev. Stat. § 746.135. Vermont has a similar restriction prohibiting insurers from conditioning or underwriting a policy on the results of testing of a family member, unless the test results are contained in the applicant’s medical record. Vt. Stat. Ann. §§ 4724(22), 9334(a).
Subsection (e). This subsection is drawn from an Oregon provision. Or. Rev. Stat. § 746.135.
SECTION 404. INSURER RETENTION OF GENETIC INFORMATION.
(a) An insurer shall require that a sample obtained for genetic testing by the insurer shall be destroyed promptly following the completion of the testing unless retention is authorized by order of a court or administrative agency.
(b) An insurer may retain a record of an individual’s informed consent for the insurer to obtain genetic information, provide genetic testing, retain genetic information, or disclose genetic information.
(c) An insurer may retain an individual’s genetic information or information about an individual’s request for or receipt of genetic services only with prior informed consent of the individual or the individual’s representative made before the retention.
(d) Informed consent for retention of genetic information is indicated by a record signed by the individual that includes a description of the genetic information to be retained, its potential uses, limitations on its use, and the person who shall retain it, and the length of time it may be retained.
Reporter’s Notes
This provision mirrors the section on employer retention of genetic information. Many statutes that require informed consent for the retention of genetic information do not treat life, disability, or long-term care insurers differently than others who might retain such information. Some states, however, exempt these insurers from their requirements for informed consent. (E.g., Mass., Nev., NH, NMex, Ok)
SECTION 405. INSURER DISCLOSURE OF GENETIC INFORMATION.
(a) An insurer may disclose an individual’s genetic information to a person other than the individual if the insurer has obtained the individual’s informed consent.
(b) Informed consent for disclosure of genetic information is indicated by a record signed by the individual that includes a description of the genetic information to be disclosed, its potential uses, limitations on its use, and the person to whom it may be disclosed.
Reporter’s Notes
This section is identical to the disclosure provision for health insurance.
SECTION 406. ENFORCEMENT AND REMEDIES.
(a) On or before two years from the date of the occurrence of an alleged violation of this article, an aggrieved individual may file a civil action or a claim with the [State Commissioner of Insurance], which may seek all available remedies, including those provided under this Act.
(b) A civil action for a violation of this article may seek compensatory damages or injunctive relief, including expungement of records. A court shall award a prevailing plaintiff costs and reasonable attorneys fees unless justice requires otherwise.
Reporter’s Notes
This section is identical to the enforcement provision for health insurance.
SECTION 501. UNIFORMITY OF APPLICATION AND CONSTRUCTION. In applying and construing this uniform act, consideration must be given to the need to promote uniformity of the law with respect to its subject matter among states that enact it.
SECTION 502. RELATION TO ELECTRONIC SIGNATURES IN GLOBAL AND NATIONAL COMMERCE ACT. This [act] modifies, limits, and supersedes the federal Electronic Signatures in Global and National Commerce Act (15 U.S.C. Section 7001, et seq.) but does not modify, limit, or supersede Section 101(c) of that act (15 U.S.C. Section 7001(c)) or authorize electronic delivery of any of the notices described in Section 103(b) of that act (15 U.S.C. Section 7003(b)).
SECTION 503. SAVINGS AND TRANSITIONAL PROVISIONS.
[SECTION 504. SEVERABILITY. If any provision of this [act] or its application to any person or circumstance is held invalid, the invalidity does not affect other provisions or applications of this [act] which can be given effect without the invalid provision or application, and to this end the provisions of this [act] are severable.]
Legislative Note: Include this section only if this state lacks a general severability statute or a decision by the highest court of this state stating a general rule of severability.
[SECTION 505. REPEALS. The following acts and parts of acts are repealed:
(1) .........................
(2) .........................
(3) .........................]
SECTION 506. EFFECTIVE DATE. This [act] takes effect . . . .