D R A F T

FOR DISCUSSION ONLY

UNIFORM PROTECTION OF GENETIC INFORMATION IN EMPLOYMENT AND INSURANCE ACT

NATIONAL CONFERENCE OF COMMISSIONERS

ON UNIFORM STATE LAWS

MEETING IN ITS ONE-HUNDRED-AND-SEVENTEENTH YEAR

BIG SKY, MONTANA

JULY 18 - JULY 25, 2008

UNIFORM PROTECTION OF GENETIC INFORMATION IN EMPLOYMENT AND INSURANCE ACT

WITH PREFATORY AND REPORTER=S NOTES

NATIONAL CONFERENCE OF COMMISSIONERS

ON UNIFORM STATE LAWS

The ideas and conclusions set forth in this draft, including the proposed statutory language and any comments or reporter=s notes, have not been passed upon by the National Conference of Commissioners on Uniform State Laws or the Drafting Committee. They do not necessarily reflect the views of the Conference and its Commissioners and 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.

DRAFTING COMMITTEE ON UNIFORM PROTECTION OF GENETIC INFORMATION IN EMPLOYMENT AND INSURANCE ACT

The Committee appointed by and representing the National Conference of Commissioners on Uniform State Laws in preparing this Act consists of the following individuals:

D. JOE WILLIS, 549 SW Mill View Way, Suite 100, Bend, OR 97702, Chair

PAMELA WINSTON BERTANI, 331 J St., Suite 200, Sacramento, CA 95814

MICHAEL B. GETTY, 430 Cove Towers Dr., #503, Naples, FL 34110

JOANNE B. HUELSMAN, 235 W. Broadway, Suite 210, Waukesha, WI 53186

SHELDON F. KURTZ, The 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 59620

LINDA K. 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, One W. Morgan St., 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, Moritz College of Law, 55 W. 12th Ave., Columbus, OH 43210, Reporter

EX OFFICIO

MARTHA LEE WALTERS, Oregon Supreme Court, 1163 State St., Salem, OR 97301‑2563, President

JAMES A. WYNN, JR., NC Court of Appeals, One West Morgan St., P.O. Box 888, Raleigh, NC 27602, Division Chair

AMERICAN BAR ASSOCIATION ADVISOR

ROGER L. JANSSON, 1201 Third Ave., Suite 2200, Seattle, WA 98101, ABA Advisor

ROBYN S. SHAPIRO, 777 E. Wisconsin Ave., Suite 2000, Milwaukee, WI 53202, ABA Advisor

EXECUTIVE DIRECTOR

JOHN A. SEBERT, 111 N. Wabash Ave., Suite 1010, Chicago, IL 60602, Executive Director

Copies of this Act may be obtained from:

NATIONAL CONFERENCE OF COMMISSIONERS

ON UNIFORM STATE LAWS

111 N. Wabash Ave., Suite 1010

Chicago, Illinois 60602

312/450-6600

www.nccusl.org

UNIFORM PROTECTION OF GENETIC INFORMATION IN EMPLOYMENT AND

INSURANCE ACT

TABLE OF CONTENTS

Prefatory Note................................................................................................................................ 1

[ARTICLE] 1GENERAL PROVISIONS

SECTION 101. SHORT TITLE.................................................................................................. 21

SECTION 102. DEFINITIONS................................................................................................... 21

[ARTICLE] 2EMPLOYMENT

SECTION 201. APPLICANT FOR EMPLOYMENT............................................................... 33

SECTION 202. GENETIC TESTING........................................................................................ 33

SECTION 203. EMPLOYEE AUTHORIZATION FOR A GENETIC TEST........................... 38

SECTION 204. ACCESS TO GENETIC INFORMATION...................................................... 43

SECTION 205. PROHIBITION ON USE OF GENETIC INFORMATION. A........................ 47

SECTION 206. AUTHORIZED USE OF GENETIC INFORMATION. ................................. 49

SECTION 207. ACCESS TO GENETIC INFORMATION BY EMPLOYEE......................... 50

SECTION 208. CONFIDENTIALITY; RETENTION AND DISCLOSURE OF

GENETIC INFORMATION.............................................................................................. 51

SECTION 209. AUTHORIZATION FOR ACCESS, USE, RETENTION, OR DISCLOSURE OF GENETIC INFORMATION OR FAMILY MEDICAL HISTORY...................................................... 52

SECTION 210. REVOCATION OF AUTHORIZATION........................................................... 58

SECTION 211. RETENTION OF AUTHORIZATION.............................................................. 59

SECTION 212. REMEDIES; LIMITATION OF ACTIONS...................................................... 59

[ARTICLE] 3HEALTH INSURANCE

SECTION 301. APPLICANT FOR INSURANCE................................................................... 62

SECTION 302. GENETIC TESTING; ACCESS TO GENETIC INFORMATION................. 63

SECTION 303. PROHIBITED USE OF GENETIC INFORMATION. ................................... 64

SECTION 304. AUTHORIZED USE OF GENETIC INFORMATION. ................................. 66

SECTION 305. RETENTION OF GENETIC INFORMATION. ............................................. 67

SECTION 306. DISCLOSURE OF GENETIC INFORMATION BY HEALTH

INSURERS....................................................................................................................... 67

SECTION 307. AUTHORIZATION FOR DISCLOSURE OF GENETIC

INFORMATION. ............................................................................................................. 69

SECTION 308. REMEDIES; ENFORCEMENT; LIMITATION OF ACTIONS...................... 72

[ARTICLE] 4LIFE INSURANCE, DISABILITY-INCOME INSURANCE, AND LONG-TERM-CARE INSURANCE

SECTION 401. APPLICANT FOR INSURANCE................................................................... 75

SECTION 402. GENETIC TESTING. ..................................................................................... 75

SECTION 403. AUTHORIZATION FOR GENETIC TEST..................................................... 78

SECTION 404. ACCESS TO GENETIC INFORMATION. .................................................... 82

SECTION 405. PROHIBITION ON USE OF GENETIC INFORMATION. ........................... 83

SECTION 406. REQUIRED DETERMINATION AND FILING FOR GENETIC

TESTING AND ACCESS AND USE OF GENETIC INFORMATION. ..................... 84

SECTION 407. CORRECTION OPTION FOR GENETIC INFORMATION. ....................... 89

SECTION 408. CONFIDENTIALITY; RETENTION OF GENETIC INFORMATION. .......... 90

SECTION 409. DISCLOSURE OF GENETIC INFORMATION. .......................................... 90

SECTION 410. AUTHORIZATION FOR ACCESS, USE, RETENTION, OR

DISCLOSURE OF GENETIC INFORMATION. .......................................................... 91

SECTION 411. REVOCATION OF AUTHORIZATION........................................................... 97

SECTION 412. RETENTION OF AUTHORIZATION.............................................................. 97

SECTION 413. REMEDIES; ENFORCEMENT; LIMITATION OF ACTIONS...................... 98

[ARTICLE] 5MISCELLANEOUS PROVISIONS

SECTION 501. UNIFORMITY OF APPLICATION AND CONSTRUCTION....................... 100

SECTION 502. RELATION TO ELECTRONIC SIGNATURES IN GLOBAL AND NATIONAL COMMERCE ACT................................................................................................................................ 100

SECTION 503. EFFECTIVE DATE....................................................................................... 100

UNIFORM PROTECTION OF GENETIC INFORMATION IN EMPLOYMENT

AND INSURANCE ACT

Prefatory Note

The scientific developments in the field of genetics are often characterized as a Arevolution.@ 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. This Act strikes a balance between making genetic information available for beneficial uses and preventing access to information that creates a risk of misuse.

There are important policy issues concerning the appropriate form and scope of regulation of genetic information. Appropriate goals for regulation include 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 Arational@ 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). See also Henry T. Greely, Genotype Discrimination: The Complex Case for Some Legislative Protection, 149 U. Pa. L. Rev. 1483, 1500 (2001).

The Drafting Committee has articulated four concepts that support the goals of protecting privacy and encouraging testing: control, confidentiality, consent, and counseling. The principle of knowing and voluntary consent can allow an individual to control genetic testing by vesting the decision in the individual to be tested. A baseline rule of confidentiality, coupled with the individual=s capability to consent to exceptions, can allow an individual to control how others access, use, retain, or disclose the individual=s genetic information. Finally, given the complexities and uncertainties of genetic science, genetic counseling is necessary if these decisions about consent are to be knowing and informed.

The Drafting Committee has identified reasons why it is important to regulate genetic testing and access, use, retention, and disclosure of genetic information by employers and insurers. These include the need to prevent fears of adverse consequences associated with genetic testing; the tendency to overstate the predictive power of genetic information, which can lead to actions that are not justified by that information; and the growing availability of genetic information.

Fear as a deterrent to genetic testing. To encourage individuals to undergo testing that can lead to advances in genetics and improved medical care, it is important to prevent fears that their privacy may be invaded or that testing may lead to detrimental treatment by employers or insurers. Currently, the public is afraid of taking advantage of genetic testing. See, e.g., Amy Harmon, Fear of Insurance Trouble Leads Many to Shun or Hide DNA Tests, N.Y. Times, Feb. 24, 2008, at A1. There is more than anecdotal evidence that these fears are widespread. In a 1997 national survey, 63% of the respondents reported that they would not take genetic tests if employers or insurers could obtain access to the results. Department of Labor, Department of Health & Human Services, Equal Employment Opportunity Commission, & Department of Justice, Genetic Information and the Workplace (Jan. 20, 1998) (available at http://www.genome.gov/10001732). In an actual genetic study of individuals at risk for hereditary colon cancer, only 43% of those eligible participated. Of those who declined, 39% said the primary reason was fear that the test results would affect their medical insurance coverage. D. Hadley, et al, Genetic Counseling and testing in families with hereditary nonpolyposis colorectal cancer, Archives of Internal Medicine 163: 573-582 (2003). These examples illustrate that individuals must have control not only over whether or not to undergo a test, but also over the information that results from genetic testing.

Exaggerated predictive power of genetic information. Because the human genome has been portrayed with images such as Ablueprint,@ Acode,@ and Afuture 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 from an individual=s genetic sequence. These diseases may arguably justify Arational@ 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 that lessens predictability.

The genetic causation of most diseases, and hence their predictability 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 Aincomplete 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.

Increased Availability of Genetic Information. 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.

Recent developments are making genetic information far more available and increasing the risk that it can be misused. One development is in genetic testing offered directly to consumers. Companies such as 23andMe and Navigenics offer a genome scan of a saliva sample for as little as $1,000. There are companies that purport to help clients find DNA-compatible mates based on differences in immune systems or use DNA samples to identify nutritional needs that can be met by purchases of dietary supplements. See generally Rick Weiss, Genetic Testing Gets Personal: Firms Sell Answers on Health, Even Love, Wash. Post, Mar. 25, 2008.

A second development that will vastly increase the amount of readily available genetic information is the ongoing transition within the practice of medicine to electronic medical records. In 2005, the Secretary of Health and Human Services, Michael Leavitt, established the American Health Information Community, a federal advisory committee, to make recommendations on how to accelerate a shift to electronic records with the goal of reducing costs and improving medical care. Genetic information is typically contained in a standard medical record. Such records could be linked to each other and available electronically.

Scope of Regulation. Proposals to regulate genetic information, however, have provoked a major policy debate over the wisdom of Agenetic exceptionalism,@ that is, the regulation of genetic 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 United States 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 from 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 Agenetic 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 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 A[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).

The drafting committee=s charge, which covers the misuse of genetic information in employment and insurance, responds to the large number of states that have enacted legislation. That legislation is highly inconsistent and often deals only partially with the issues associated with genetic information. 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.

Privacy Protections in General

General Policy Issues

The genetic revolution has raised challenges for several different aspects of privacy: informational privacy, physical privacy, decisional privacy, and proprietary privacy. See Anita L. Allen, Genetic Privacy: Emerging Concepts and Values, in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era 31 (Mark A. Rothstein, ed. 1997).

Informational privacy can be thought of as an individual=s ability to determine what information about that individual should be available to others. ABy controlling personal information, individuals can control the extent to which other people can participate in their lives.@ David Orentlicher, Genetic Privacy in the Patient-Physician Relationship, in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era 77 (Mark A. Rothstein, ed. 1997). Informational privacy of any type is challenging given advances in information technology that greatly increase the potential for others to access or disclose one=s personal information.

In the genetic context, an individual=s primary informational concern is the confidentiality or anonymity of the results of genetic testing. This privacy interest extends beyond the results of one=s personal genetic testing to genetic testing of blood relatives, which can also provide information about the individual. The desire to maintain the privacy of this genetic information often has a consequential motivation: people are concerned about others using their genetic information to their detriment. It also springs from a sense of the intrinsic value of keeping such personal information private whether or not the release of genetic information could lead to adverse consequences. The understanding that one=s characteristics, and even one=s personality, are strongly linked to one=s genetic composition heightens the sense that this information is a reflection of personal identity, and thus has inherent personal value.

The other forms of privacy are also important in the context of genetics. Physical privacy, the protection of bodily and personal space, is implicated by genetic testing or treatment. The importance of this form of privacy is recognized in concern for informed, voluntary consent for genetic testing. Decisional privacy, the freedom to make choices without interference by others, is implicated by the need to make decisions about using genetic services. Decisional privacy is an important tenet of genetic counseling, which supports autonomous decisionmaking about having genetic testing and learning the results of the testing. Proprietary privacy, control over possessions and economic interests, is implicated by the value of some individuals= samples or genetic information and by a sense of ownership of one=s own identity. See Anita L. Allen, Genetic Privacy: Emerging Concepts and Values, in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era 31 (Mark A. Rothstein, ed. 1997).

Privacy is valued in society and law, but not absolutely. The important interest in genetic privacy and confidentiality must be balanced against competing values, including facilitating medical research, improving medical care, protecting public health, enforcing the law, and controlling costs.

The Federal Regulatory Context

State legislation on privacy of medical information is set against the background of the 1996 Health Insurance Portability and Accountability Act (HIPAA), which covers health insurers and other health practitioners, and the recently enacted Genetic Information Nondiscrimination Act of 2008 (GINA), Pub. L. 110-233, which covers health insurers and employers.

Title II of HIPAA required the Department of Health and Human Services to promulgate rules that created standards for the use and dissemination of health care information, including what is now called AThe Privacy Rule.@ The Privacy Rule, which took effect in 2003, regulates those who create and disclose health information B individual practitioners, multi-national health plans, pharmacies, and information clearinghouses B but not many of the key recipients of this information. ACovered entities,@ which include most health insurers, may disclose Aprotected health information,@ i.e., Aindividually identifiable health information@ to facilitate treatment, payment, or health care operations. For other disclosures, with some exceptions, they must first obtain Aconsent,@ Aauthorization,@ or Aagreement@ from the individual, depending on the circumstances of the disclosure. The Privacy Rule also allows individuals access to their own health information and gives them the right to request a correction of any inaccurate data. Covered entities must notify individuals of uses of their protected health information and keep records of disclosures.

Health insurers who are covered entities must follow these rules when they disclose health information to employers or life, disability-income, or long-term-care insurers, but employers and these insurers are not directly subject to the HIPAA regulations and so do not need to follow these rules in their own treatment of the information.

Although HIPAA does include general preemption provisions, they do not apply to state laws that relate to the privacy of individually identifiable health information that are contrary to and more stringent than the federal requirements. Thus HIPPA provides a floor, not a ceiling, for privacy protections and would not preempt the privacy provisions of the Act.

Recent federal legislation has established specific privacy requirements for genetic information. GINA supplements privacy regulations for group, individual and medigap health insurers already covered by the HIPAA privacy regulations. It prohibits these health insurers from requesting, requiring or purchasing genetic information before an individual=s enrollment and from using genetic information in underwriting or determining eligibility.

The legislation also limits access, use, and disclosure of genetic information by employers, labor organizations, employment agencies, and joint labor-management committees. Its provisions do not apply to life, disability-income, and long-term-care insurers. Like HIPAA, the GINA employment provisions do not preempt state legislation that provides equal or greater privacy protection to individuals.

Current State Statutes

Approximately 15 states have statutes that protect the privacy of genetic information in general, without regard to employment or insurance or any other specific context. Most of these statutes are tailored to cover information derived from genetic testing, although some establish a principle of confidentiality for medical information more generally. (Cal, Maine, ND) Many of these statutes declare that genetic testing and test results are confidential. See, e.g., Ariz. (confidential and privileged), Cal, Maine, New York, Oregon. A few states have established a property right in genetic test results. Alaska Stat. ' 18.13.010 (exclusive property right in DNA sample and results of analysis performed on sample); Fla. Stat. ' 760.40 (results of DNA analysis are the exclusive property of the person tested); OR (repealed)).

Most of these generally-applicable statutes prohibit obtaining, analyzing, retaining, or disclosing genetic test results without the informed consent or specific authorization of the tested individual. All these statutes also define exceptions where genetic information may be obtained or disclosures may be made without authorization. Typical exceptions include law enforcement purposes and paternity determinations. Some states also exempt certain forms of insurance. See, e.g., Mass. (disability-income and long-term-care insurance); NH (life, disability-income, and long-term-care insurance); NMex (life, disability-income, and long-term-care insurance if underwriting based on sound actuarial principles); OK (life, disability-income, and long-term-care insurance). Others make special provisions for research. See, e.g., NY; OR (repealed).

The NCCUSL Draft

This draft protects privacy through limitations on the ability of employers and insurers to require genetic tests and to access, use, retain, and disclose genetic information. These limitations are coupled with requirements that employees and insureds authorize testing and access, use, retention, and disclosure of their genetic information. The Drafting Committee considered adopting a property right as a means to protect privacy of genetic information, but decided against this approach. While it might make sense to recognize a property right in genetic information in general, it is difficult to do only in the context of employment and insurance. Moreover, a majority of the committee felt that a system of limitations on testing, access, use, retention, and disclosure would be as effective as a property right in providing control over genetic information.

Employment

General Policy Issues

Many contend that employers= ability to obtain genetic information should be limited because it has few appropriate uses in the workplace. The concern is that if employers are permitted to 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 (HIPAA) protects employees against discrimination in 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.