Protecting Privacy in the Behavioral Genetics Era

*Harold J. Bursztajn, M.D. Richard Sobel, Ed.D & Amy Allbright

Genetic information is emerging as having great value for improving human health. At the same time, there is a growing concern among the public that it may be misused by a variety of third parties. For example, employers may rely on genetic information in making certain personnel decisions, such as whether to hire a particular job applicant or promote or terminate a current employee. Insurers may also use this information to deny, limit, or cancel coverage, as well as charge prohibitive rates. Similarly, managed care companies may deny health care coverage to patient populations judged as being genetically too risky. And, pharmaceutical companies may pay pharmacies to send out announcements about their genetically engineered medications to persons with genetic propensities to mental illnesses.

The potential for misuse is increased by the common misconception that genes determine one's fate. However, a genetic disposition to a disease does not mean that a person will get that disease, but rather that he or she has an increased likelihood of getting it. Environmental factors, human choice, and personal attitudes about risk also play a central role in individual vulnerability to disease.

President Bush recognized this potential for misuse. In announcing his plan to draft anti-genetic discrimination legislation, he cautioned that the genetic data made available by the decoding of the human genome "has the potential to be abused." [1] Moreover, the Human Genome Project (HGP)—a 13-year international research effort launched in 1990 and coordinated by the U.S. Department of Energy and the National Institutes of Health—raised public awareness as one of the first large scientific undertakings to research the ethical, legal, and social implications that may arise from knowledge about human genetic make-up. HGP's goal was "to identify the approximately 35,000 genes in human DNA and to map out and sequence the three billion chemical base pairs that make up human DNA." [2]

How to Protect Genetic Information?

Employment
(i) State Laws

In response to this concern, 27 states have passed legislation banning genetic discrimination in the workplace. See chart following the article. Some states have broad bans, prohibiting employers from discriminating against employees and job applicants on the basis of genetic information, while other states bar discrimination based on genetic information unrelated to employees' and applicants' abilities to perform the duties of their particular position. Some state statutes incorporate language from the Americans with Disabilities Act (ADA), banning discrimination against "otherwise qualified" employees and applicants. Other statutes provide that employers shall treat genetic testing in a manner consistent with federal laws, such as Title I of the ADA. [3]

(ii) Executive Order

President Clinton issued an Executive Order in February 2000 prohibiting discrimination against federal job applicants and current and former government employees "based on protected genetic information, or information about a request for or the receipt of genetic services." [4] "Protected genetic information" is defined as information about the genetic tests of an individual and his or her family members, and the occurrence of a disease or medical condition/disorder among family members. [5] Under the Order, federal employers are barred from requesting, requiring, collecting, or purchasing protected genetic information, with the following exceptions.

A private employer may request or require that an employee, or a job applicant who is given a conditional offer of employment provide information regarding the occurrence of a disease or medical condition/disorder among his or her family members if (1) "the request or requirement is consistent with the Rehabilitation Act and other applicable law"; (2) "the information is to be used exclusively to assess whether further medical evaluation is needed to diagnose a current disease, or medical condition or disorder"; (3) the "current disease, or medical condition or disorder, could prevent the applicant or employee from performing the essential functions of the position held or desired"; and (4) "the information...will not be disclosed to persons other than medical personnel involved in or responsible for assessing" the necessity of further medical evaluation. [6]

In addition, an employer may request, collect, or purchase protected genetic information if an employee uses the employer-provided genetic or health care services and has given the employer knowing, voluntary, and written authorization to collect it, and the person who performs the services does not disclose the protected information to anyone except the employee. [7] Employers may also conduct genetic monitoring of the biological effects of toxic substances in the workplace if employees have provided prior, knowing, voluntary, and written authorization. Employers must notify employees when the monitoring results are available, make any protected genetic information acquired during the monitoring available to employees, and inform them of how to obtain that information. The monitoring must conform to any genetic monitoring regulations promulgated by the Secretary of Labor. Employers, as well as any licensed health care professionals involved in the monitoring, may only receive the results in aggregate terms that do not disclose the identities of specific employees. [8]

(iii) Americans with Disabilities Act (ADA)

Title I of the ADA may also offer some protection against genetic discrimination. Under the ADA, employers are prohibited from conducting medical examinations and making inquiries as to whether a job applicant has a disability at the pre-offer stage of the selection process. [9] In its 2000 Enforcement Guidance, the Equal Employment Opportunity Commission (EEOC) stated that disability-related inquiries include asking about an employee's genetic information, and medical exams include tests to detect disease or genetic markers. [10]

However, once a job offer is made, employers may require applicants to undergo medical exams and condition the offer on the results of those exams if (1) "all entering employees in the same job category are subjected to such an examination regardless of disability," [11] and (2) "information obtained regarding the medical condition or history of the applicant is collected and maintained on separate forms and in separate medical files and is treated as a confidential medical record." [12] With respect to this latter provision, supervisors and managers may be informed regarding necessary restrictions on the applicant's work or duties; first aid and safety personnel may be informed, when appropriate, if the disability might require emergency treatment; and government officials investigating compliance with this provision must be provided relevant information upon request. [13]

Finally, once applicants arc placed in a job, employers may require medical examinations or make inquiries of their disability as long as they are job-related and consistent with business necessity. [14]

An important issue arises as to whether individuals who have a predisposition to a genetic disease (asymptomatic) are "disabled," defined under the ADA as having a physical or mental impairment that substantially limits a major life activity, having a record of such an impairment, or being regarded as having such an impairment. [15] The EEOC adopts the view that discrimination based on this type of genetic predisposition is covered under the "regarded" prong of the ADA's definition of disability. [16] And, in June 2002, a Wisconsin federal court approved a mediated settlement of an ADA Title I claim brought by the EEOC against the Burlington Northern & Santa Fe Railroad. [17] The EEOC claimed that the railroad's testing of employees, who filed claims for work-related injuries based on carpal tunnel syndrome (CTS), for a genetic marker linked to CTS, without their knowledge or consent, was neither job-related nor consistent with any business necessity. Two months after the suit was filed, the EEOC and Burlington reached a settlement. Under its terms, Burlington agreed to stop the genetic testing and to pay those employees who had been tested up to $2.2 million.

The U.S. Supreme Court's 1998 decision in Bragdon v. Abbot [18] may support the position that individuals with asymptomatic genetic conditions are covered under the "actual" prong of the ADA'S disability definition. In Bragdon, the Court ruled that a woman with asymptomatic HIV was disabled under the ADA, because HIV is a physical impairment that substantially limits the major life activity of reproduction. In finding HIV to be a physical impairment, the Court emphasized the "immediacy with which the virus begins to damage the infected person's white blood cells and the severity of the disease...," [19] as well as the "predictable" and "unaltered course" of the disease. [20] The Court then found that the respondent's fear of transmitting the disease to her sexual partner or child substantially limited her ability to reproduce. [21]

Applying the principles of Bragdon, in order for plaintiffs with asymptomatic genetic conditions to be covered under the first prong of the ADA's definition of disability, they would have to show immediate physiological manifestations that have a constant and detrimental effect on their bodies. They would also have to show a substantial limitation to a major life activity. As for reproduction, not all genetic diseases pose a risk to one's sexual partners, and the risk to one's offspring is uncertain. [22] Significantly, in his dissent, Chief Justice William Rehnquist, joined by Justices Scalia and Thomas, seemed to reject the notion that the ADA necessarily covers genetic discrimination. The dissent stated: "Respondent's argument, taken to its logical extreme, would render every individual with a genetic marker for some debilitating disease 'disabled' here and now because of some possible future effects." [23]

Contrary to the EEOC's view that individuals with asymptomatic genetic conditions are covered under the "regarded" prong, a divided Seventh Circuit in 2001 dismissed the EEOC's Title I suit against Rockwell International Corporation (RIC) for its failure to hire 72 applicants based solely on the results of nerve conduction tests, which revealed an increased likelihood of developing CTS in the future. [24] The EEOC claimed that RIC regarded the applicants as substantially limited in the major life activity of working—that is, "significantly restricted in the ability to perform either a class of jobs or a broad range of jobs in various classes as compared to the average person having comparable training, skills and abilities." [25] The appeals court found that the EEOC failed to present evidence of the number and type of other jobs in southern Illinois from which the applicants would be excluded because of their perceived impairments. [26] The majority refused "to infer that Rockwell regarded the claimants as significantly restricted from entering that market based solely on the fact that Rockwell perceived them as unable to perform four specific jobs at Rockwell." [27]

Furthermore, the U.S. Supreme Court in Sutton v. United Air Lines, Inc. [28] stated that the ADA requires that "a person be presently—not potentially or hypothetically—substantially limited." [29] The Court also emphasized that the determination as to whether an individual is disabled is an "individualized inquiry." [30] Asymptomatic individuals do not have a genetic condition, but rather only genetic markers for one. As the author of one law review pointed out: "And prior to the onset of symptoms, the information provided by such genes is entirely probabilistic. The predicted effect on a particular person is based on the experiences of large numbers of people with the same genetic trait, not its actual effects on that individual." [31]

Insurance Coverage
(i) States

Forty-five states have enacted legislation restricting the use of genetic information by insurers. Many states prohibit insurers from using genetic information about insureds (or their family members) to determine eligibility or continued eligibility; deny, cancel, limit, or refuse to renew coverage; establish premiums; or for any other underwriting function. Many states also bar insurers from treating genetic information as a preexisting condition for purposes of excluding coverage, absent a diagnosis of a condition related to such information. Some states bar insurers from disclosing genetic information, and require insureds' written informed consent before insurers can obtain their genetic information. See chart following the article.

(ii) HIPAA Privacy Rule

The U.S. Department of Health and Human Services (HHS) issued the Privacy Rule, effective April 14, 2003, to implement the Health Insurance Portability and Accountability Act of 1996 (HIPAA). [32] HIPAA prohibits group health plans or issuers of such plans from (1) using any health status-related factor, including genetic information, to establish rules for eligibility or continued eligibility, [33] (2) requiring participants to pay a premium or contribution greater than that for similarly situated participants on the basis of genetic information, [34] and (3) treating genetic information as a preexisting condition absent a diagnosis of the condition related to such information. [35] However, the law covers only individuals in a group plan. Moreover, HIPAA does not (1) prohibit group health plans or issuers of such plans from requiring or requesting genetic testing, (2) require plans or issuers to obtain authorization before disclosing genetic information, or (3) prevent them from excluding all coverage for a particular condition or imposing lifetime caps on all benefits or on specific benefits. [36]

The primary purpose of the Privacy Rule is to define and limit the circumstances in which the covered entities—health plans, health care clearinghouses, and health care providers [37]—may use or disclose an individual's "protected health information (PHI)." PHI is defined as individually identifiable health information transmitted by electronic media, maintained in electronic media, or transmitted or maintained in any other form or medium that (1) relates to any past, present, or future physical or mental health condition, payment for health care, or provision of health care to an individual; (2) is created or received by a covered entity; and (3) identifies or can be used to identify the individual. [38] This information encompasses medical records and health care claims, as well as information used or created in conjunction with such health care transactions as health plan enrollment, premium payments, payment for health care, and coordination of benefits. [39]

Covered entities must obtain an individual's written authorization for any use or disclosure of PHI that is not for treatment, payment, or health care operations or otherwise permitted by the Privacy Rule. [40] In addition, these entities must make reasonable efforts to ensure that PHI used, disclosed, or requested is limited to the minimum amount of PHI needed to accomplish the intended use, disclosure, or request. [41] To protect against improper use and disclosure of PHI, the entities must develop and implement written privacy policies and procedures. [42]

Employment & Insurance
(i) Genetic Non-Discrimination Act

On May 21, 2003, the Senate Committee on Health, Education, Labor and Pensions (HELP) approved the Genetic Non-Discrimination Act [43] by voice vote, sending it to the full senate for consideration. The Act would bar (1) employers, employment agencies, labor unions, and training programs from using genetic information to make hiring, compensation, and other personnel decisions; (2) insurance companies from using genetic information about an individual (and his or her family members) to grant or deny health coverage or to adjust premiums; (3) employers and insurers from requesting genetic information, and from requesting or requiring genetic testing, except for treatment or to monitor the adverse effects of hazardous workplace exposures; and (4) employers and insurers from disclosing genetic information for personnel, underwriting, or other unauthorized purposes. Victims of genetic discrimination would be able to sue for damages, and persons denied enrollment in a group health plan could get retroactive coverage. [44]

Informed Consent

Privacy protection laws and regulations serve as a complementary means to anti-discrimination laws in protecting genetic information before it is disclosed to third parties. The goal is to afford genetic information as high a level of protection as is currently afforded to confidential communications between psychotherapists and their patients pursuant to the federal psychotherapist-patient privilege. [45]

The decoding of the human genome has created the possibility of having a map of a person's very make-up. Genetic information reveals the details of a person's innermost self. Eventually, one's genetic information will become part of his or her medical record. Providing for informed consent promotes individual control over whether and under what conditions such information may be disclosed. The right to privacy has long been recognized as central to living a meaningful life. [46] Medicine, from its beginnings, has been concerned with protecting patient privacy. [47] Informational consent is essential to protecting patient confidentiality. [48]

Persons who learn that they have a genetic marker for a debilitating disease may experience severe psychological consequences, such as depression, feelings of helplessness, and loss of self-worth and security. Public disclosure of this information may compound these feelings, as well as carry a high risk of stigmatization, particularly among persons with a gene(s) linked to mental illness. The fear of stigmatization may become a chronic stressor in one's life. [49] Moreover, genetic information has implications for the individual's siblings and children, even the unborn.

Individuals need time and support to come to terms with their genetic information. While genetic counseling is essential to address feelings of helplessness and vulnerability to stigmatization, its effectiveness depends on the assurance that individuals retain a choice as to who, including themselves, knows about their genetic endowment. [50] Informed consent need not be an imposition upon or even an amendment to the practice of medicine. At its best, informed consent is an integral part of providing good medical care. [51] It involves exploring with patients the meaning of any planned third-party disclosure of their medical records, as well as the risks, benefits, and alternatives to doing so or not. Supporting clinicians talking with patients about their privacy choices regarding genetic information can help deepen the therapeutic alliance, thereby facilitating both humane patient care, trust, and effective risk management. [52] Legislation is needed to ensure a meaningful informed consent process for genetic information. Patients, as well as clinical researchers, are likely to benefit as more valid family histories become available in an atmosphere of increased patient empowerment and trust. [53]

*Harold J Bursztajn M.D. is Co-Director of the Harvard Medical School Program in Psychiatry & the Law at the Massachusetts Mental Health Center. All correspondence may be addressed to harold_bursztajn@hms.harvard.edu. For more information, see http://www.forensic-psych.com/ Dr. Richard Sobel is Senior Research Fellow for Health & Public Policy of the Harvard Medical School Program in Psychiatry & the Law at the Massachusetts Mental Health Center. Amy Allbright is the Managing Editor of the American Bar Association Commission on Mental and Physical Disability Law's Mental & Physical Disability Law Reporter. The authors wish to thank John Parry, Peter Epstein, Audrey Capuano, and the members of the Harvard Medical School Program for their helpful contributions.

NOTES

  1. Jeanne Cummings & Glenn R. Simpson, "Bush Readies Plan for Law to Prevent Genetic Discrimination," Wall. St. J., June 26, 2001, at B2.
  2. Robert A. Curley Jr. & Lisa M. Caperna, "The Brave New World Is Here: Privacy Issues and the Human Genome Project," 70 Def. Couns. J. 22, 24 (Jan. 2003).
  3. 42 U.S.C.§§12111-117.
  4. Exec. Order No. 13145,65 Fed. Reg. 6,8777 (2000), 3 C.F.R. §235 (Feb. 8, 2000). See also Equal Employment Opportunity Commission (EEOC) Enforcement Guidance, No. 915.002, Policy Guidance on Executive Order 13145: To Prohibit Discrimination in Federal Employment Based on Genetic Information (June 26, 2000), at http://www.eeoc.gov/policy/docs/guidance-genetic.html.
  5. §l-201(e)(1)(A)-(C).
  6. §l-30l(a)(l)-(4).
  7. §l-30l(b)(l)-(3).
  8. §1-301(D)(l)-(4).
  9. 42 U.S.C. §12112(d)(2).
  10. EEOC, No. 915.002, Enforcement Guidance: Disability-Related Inquiries and Medical Examinations of Employees Under the Americans with Disabilities Act (June 27, 2000), at http://www.eeoc.gov/policy/docs/guidance-inquiries.html.
  11. 42 U.S.C. §12112(d)(3)(A).
  12. Id. at §12112(d)(B).
  13. Id. at §12112(d)(B)(i)-(iii).
  14. Id. at §12112(d)(B)(4)(A).
  15. Id. at §12102(2).
  16. EEOC, No. 902.8, Section 902: Definition of the Term "Disability" (Mar. 1995), at http://www.eeoc.gov/policy/docs/902cm.html.
  17. EEOC v. Burlington N. & Santa Fe. R.R., No. 02-C-0456 (E.D. Wis. June 28, 2002).
  18. 524 U.S. 614 (1998).
  19. Id.at 637.
  20. Id.at 633.
  21. Id. at 639-40.
  22. Pauline T. Kim, "Genetic Discrimination, Genetic Privacy: Rethinking Employee Protections for a Brave New World," 96 NW. U. L. Rev. 1497, 1528-29 (2002).
  23. 524 U.S. at 661.
  24. EEOC v. Rockwell Int'l Corp., 243 F.3d 1012 (7th Cir. 2001).
  25. 29 C.F.R. §1630.2(j)(3)(ii)(Ą)-(B).
  26. Rockwell, 243 F.3d at 1018.
  27. Id.
  28. 527 U.S. 471 (1999).
  29. Id. at 482.
  30. Id.at 483.
  31. Kim, supra note 22, at 1528.
  32. Pub. L. No. 104-191, 110 Stat. 1936 (1996). In South Carolina Med. Ass'n v. Thompson. 327 F.3d 346 (4th Cir. 2003), the Fourth Circuit held that HIPAA did not impermissibly delegate the legislative function in authorizing the Department of Health and Human Services to promulgate the Privacy Rule. The appeals court also held that Congress did not unconstitutionally relinquish its lawmaking function by mandating that final regulations governing standards with respect to the privacy of individually identifiable health information be promulgated within 36 months of HIPAA's enactment if no further legislation on the subject were enacted.
  33. §2702(a)(1).
  34. §2702(b)(l).
  35. §2701(b)(1)(B).
  36. See http://www.tgac.org/legislation/govhist.html.
  37. 45 C.F.R. §160.103.
  38. Id.
  39. "Focus On: Employee Privacy Under HIPAA," 6 Employment L. Rep. (Newsletter) 4 (Oakstone Legal & Business Publishing, Inc. July 2003).
  40. 45 C.F.R. §164.508.
  41. Id. at §l64.502(b), §164.514(d).
  42. Id. at §164.530(i). See http://www.hhs.gov/ocr/hipaa.
  43. S. 1053, 108th Congress, 1st Session (2003). See http://thomas.loc.gov/cgi-bin/query/z?c108:S.1053:.
  44. See "Bill Protects Genetic Discrimination: Compromise Might Spur Passage," 26 Mental Health L. Rep. 59 (Business Publishers, Inc. June 2003).
  45. Jaffee v. Redmond, 518 U.S. 1 (1996).
  46. George Annas, "HIPAA Regulations—A New Era of Medical-Record Privacy," 348 New Eng. J. Med. 1486-90 (2003).
  47. Charles Welch, "Sacred Secrets—The Privacy of Medical Records," 345 New Eng. J. Med. 371-72 (2001).
  48. Richard Sobel, "No Privacy for All? Serious Failings in the HHS Medical Records Regulations," 5 J. Biolaw & Bus. 45-48 (2002).
  49. Erving Goffman, The Presentation of Self in Everyday Life (Doubleday 1959): Anthony Zarrinpar, "Psychiatry & Stigmatization," 287 JAMA 1856(2002).
  50. Harold J. Bursztajn et al., Medical Choice. Medical Chances: How Patients, Families, and Physicians Can Cope with Uncertainty 436-37 (1981, reissued 1990). See http://www.iuniverse.com/bookstore/book_detail.asp?isbn=0%2D595%2D16517%2D6
  51. Id. at 437.
  52. Bursztajn et al., .supra note 50.
  53. Knut Fylkesnes & Torgeir Knag. "Informed Consent as Part and Parcel of the Scientific Inquiry," 361 Lancet 2171-72 (June 28, 2003).

ALABAMA

Ala. Code §27-53-2 (1975), 1997 Ala. Acts. No. 97-721, §2.

Prohibits health benefit plans from using genetic testing for predispositions for cancer as condition of insurability.

ALASKA

Alaska Stat. §21.54.100 (§59. ch. 81 SLA 1997).
Alaska Stat. §21.54.110 (§59, ch. 81 SLA 1997).

Bars health care insurers from basing eligibility rules on genetic information, and from considering genetic information for preexisting condition exclusions absent diagnosis of condition related to that information.

ARIZONA

Ariz. Rev. Stat. Ann. §20-448.
Ariz. Rev. Stat. Ann. §41-1463.

Prohibits rejection of application or determination of rates, terms, or conditions of disability insurance on basis of genetic condition absent diagnosis of condition related to that information. Bars employers from refusing to hire or discharging individuals based on genetic testing.

ARKANSAS

Ark. Code Ann. §11-5-403.
Ark. Code Ann. §23-86-304 (Acts 1997, No. 997. §1).
Ark. Code Ann. §23-86-306 (Acts 1997, No. 997, §1).

Prohibits employers from using genetic testing to distinguish, discriminate against, or restrict any right or benefit otherwise due to employees/prospective employees. Precludes use of genetic testing as preexisting condition exclusion absent diagnosis of condition related to that information. Bars group health Insurers from establishing rules for eligibility or continued eligibility based on genetic information.

CALIFORNIA

1998 Cal. Legis. Serv. ch. 521 (SB 1654) (West).
Cal. Ins. Code §10123.35.
Cal. Ins. Code §10198.9.
Cal. Ins. Code §10705.

Prohibits multiple employer insurers from requiring genetic tests to determine insurability (with some exceptions), refusing to enroll or requiring higher rates on basis of genetic information, and seeking genetic information for non-therapeutic purposes. Provides for fines up to $10,000 and full liability for any damages resulting from negligent disclosure to third parties of genetic test results. Bars disability insurers from excluding enrollees on basis of genetic Information.

COLORADO

Colo. Rev. Stat. Ann. §10-3-1104.7.

Requires written consent for release of genetic testing information for any non-therapeutic purpose. Bars any entity that receives such information from seeking, using, or keeping it for any non-therapeutic purpose or underwriting purpose connected with provision of health care, group disability, or long-term insurance coverage.

CONNECTICUT

Conn. Gen. Stat. Ann. §38a-476.
Conn. Gen. Stat. Ann. §46a-60(a)(11).

Prohibits health insurers from treating genetic information as preexisting condition for purposes of excluding coverage absent diagnosis of condition related to that information. Bars, with certain exceptions, employers from requesting or requiring genetic information from employees/applicants.

DELAWARE

Del. Code Ann. tit. 19, §711(a).
Del. Code Ann. tit. 18, §§3572, 3602.

Prohibits employers from discriminating on basis of genetic information. Bars health benefit plans from establishing eligibility rules based on genetic information, which is a "health status-related factor."

FLORIDA

Fla. Stat. Ann. §448.075.
Fla. Stat. Ann. §§627.4301, 627.65625, 641.31071, 641.31073, 641.438.

Prohibits employment discrimination against persons with sickle-cell trait. Bars insurance companies, including prepaid health clinics and health service organizations, from using genetic information absent diagnosis of condition related to that information.

GEORGIA

Ga. Code Ann. §§33-54-1 through 54-7.

Bars accident and sickness insurance companies, health maintenance organizations, and managed care organizations from denying coverage on basis of genetic testing information.

HAWAII

Haw. Rev. Stat. Ann. §431:10A-11B.
Haw. Rev. Stat. Ann. §432:1-607.
Haw. Rev. Stat. Ann. §432D-26.

Prohibits insurers, mutual benefit societies, and health maintenance organizations from using individual's or family member's genetic information or request for genetic services to deny or limit coverage; to establish eligibility, continuation of eligibility, or enrollment; or to set premium payments. Also bars disclosure of genetic information.

IDAHO

Idaho Code §§41-2221, 41-3940, 41-4708.

Precludes genetic information from being considered preexisting condition for insurance purposes for small employers, large employers, or under managed care plan absent diagnosis of condition related to that information.

ILLINOIS

410 Ill. Comp. Stat. 513/1 et seq.
410 Ill. Comp. Stat. 513/20. 513/25.

Requires employers to treat genetic testing in manner consistent with federal law, including the Americans with Disabilities Act. Bars accident and health insurers from using information obtained through genetic testing for non-therapeutic purposes.

INDIANA

Ind. Code Ann. §27-8-26-5.
Ind. Code Ann. §§27-8-26-7, -8.

Prohibits insurers, in processing applications for health care services coverage or determining insurability for such coverage, from requiring genetic testing or precluding coverage based on genetic testing. Also bars insurers from limiting benefits, establishing premiums, or canceling and refusing to issue, renew, or enter into a contract for health coverage based on testing.

IOWA

Iowa Code Ann. §729.6.
Iowa Code Ann. §513B.9A.

Prohibits genetic testing as condition of employment. Bars group health insurance coverage carriers from establishing eligibility rules that consider genetic information.

KANSAS

Kan. Stat. Ann. §40-2259.

Prohibits insurance companies, health maintenance organizations, and other corporations from conditioning coverage on individuals and their family members undergoing genetic testing.

KENTUCKY

Ky. Rev. Stat. Ann. §304.12-085.

Prohibits insurers from denying, cancelling, or refusing to renew coverage on basis of genetic testing or participant's requested or received genetic services where symptoms of condition not manifest.

LOUISIANA

La. Rev. Stat. Ann. §22:213.7.
La. Rev. Stat. Ann. §22:250.3.
La. Rev. Stat. Ann. §23:352.
La. Rev. Stat. Ann. §23:368.

Prohibits insurers from obtaining genetic information from insured/enrollees, or from their DNA sample, without first obtaining written informed consent. Also bars discrimination against participants/beneficiaries based on genetic information. Prohibits employers of 20 or more employees from failing or refusing to hire, discharging, or otherwise discriminating against any individual with sickle-cell trait. Bars discrimination against otherwise qualified persons in the workplace based on genetic information.

MAINE

Me. Rev. Stat. Ann. tit. 24-A, §2850.
Me. Rev. Stat. Ann. tit. 24-A. §2850-C.
Me. Rev. Stat. Ann. tit. 5, §19302.

Bars insurers from using genetic information as basis for imposing preexisting condition exclusion absent diagnosis of condition relating to that information. Prohibits insurance carriers from establishing eligibility rules or requiring greater premiums based on genetic information. Bars employers from failing or refusing to hire, discharging, or otherwise discriminating against employees/applicants with respect to compensation, terms, or conditions of employment on basis of their genetic information, their refusal to submit to genetic testing or make available test results, or their receiving genetic testing or genetic counseling, except when based on bona fide occupational qualification.

MARYLAND

Md. Code Ann. of 1957, art. 48A, §759; 1997; ch. 294, §3.
Md. Code Ann. of 1957. art. 49B. §16; 2003.
Md. Code Ann., Ins. §27-909.

Bars insurance carriers of health benefit plans from limiting coverage under preexisting condition provision based on genetic Information. Prohibits insurers, nonprofit health service plans, and health maintenance organizations from (1) using genetic tests and results, genetic information, or requests for genetic services to reject, deny, limit, or otherwise affect a health insurance policy or contract and (2) requesting or requiring genetic testing, test results, or genetic information to determine whether or not to issue or renew coverage. Prohibits employers from failing or refusing to hire, discharging, and otherwise discriminating against employees/applicants based on their refusal to submit to genetic testing or make available test results; from limiting, segregating, or classifying employees/applicants so as to otherwise adversely affect their status based on their refusal to submit to genetic testing or make available tost results; and from requesting or requiring genetic testing or information as condition for hiring or determining benefits.

MASSACHUSETTS

Mass. Gen. Laws ch. 151B, §4.
Mass. Gen. Laws ch. 175. §§108H-I.
Mass. Gen. Laws ch. 175. §120E.

Prohibits employers, employment agencies, and labor organizations from discriminating on basis of genetic information. Bars insurers and insurance brokers from canceling, refusing to issue or renew, and making any distinction or discrimination in premiums or rates charged, in Length of coverage, or in any other terms and conditions of any individual policy of accident or sickness insurance or disability insurance based on genetic information. Bars insurers, agents, and brokers from requiring genetic testing as condition of issuance or renewal of policy.

MICHIGAN

Mich. Comp. Laws Ann. §37.1202.
Mich. Comp. Laws Ann. §550.1401.
Mich. Comp. Laws Ann. §333.21072a.
Mich. Comp. Laws Ann. §500.3407b.

Prohibits employers from discriminating against employees/applicants because of genetic information unrelated to their ability to perform duties of their position. Bars health care corporations from requiring members, applicants, or their dependents to undergo genetic testing, disclose whether genetic testing has been conducted, and disclose test results. Bars insurers and health maintenance organizations from requiring enrollees, their dependents, or asymptomatic applicants to undergo genetic testing before issuing, renewing, or continuing coverage.

MINNESOTA

Minn. Stat. Ann. §72A.139.
Minn. Stat. Ann. §375.1306.

Prohibits health plan companies from considering genetic test results of individuals or their blood relatives to determine eligibility, establish premiums, limit coverage, renew coverage, or for any other underwriting function. Prohibits employers and employment agencies from discriminating on basis of genetic information.

MISSISSIPPI

 

As of August 2003, Mississippi had no state laws barring use of genetic tests in insurance or employment.

MISSOURI

Mo. Ann. Stat. §375.1306.
Mo. Ann. Stat. §375.1303.

Prohibits employers from using genetic information or genetic test results to discriminate against employees/applicants. Bars insurers, in connection with offer, sale, or renewal of health plan, from requiring individuals to provide genetic information or undergo genetic testing.

MONTANA

Mont. Code Ann. §33-18-206.
Mont. Code Ann. §33-18-903.

Prohibits insurers, health service corporations, health maintenance organizations, fraternal benefit societies, or other issuers of individual or group policies or certificates of insurance from failing or refusing to accept application for policy or certificate of insurance; failing or refusing to issue policy or certificate; canceling policy or certificate; refusing to renew policy or certificate; charging higher rates or premiums for policy or certificate; offering or providing different terms, conditions, or benefits for policy or certificate; and limiting coverage of policy or certificate on basis of person's genetic traits.

NEBRASKA

Neb. Rev. Stat. §44-787.
Neb. Rev. Stat. §48-236.

Bars health carriers, in exercising option to discontinue health insurance policy or contract, from considering genetic information, a health status-related factor. Prohibits employers from discriminating on basis of genetic information.

NEVADA

Nev. Rev. Stat. Ann. §§ 613.345, 629.121, 629.131, 629.161, 629.191, 629.201, 689A.417, 689A.585, 689B.069, 689B.550, 689C.D76, 689C.082, 689C.193, 689C.198, 695B.317, 695C.207.

Prohibits employers, labor organizations, and employment agencies from asking or encouraging prospective/current employees or members of the labor organization to submit to genetic tests; from requiring or administering genetic tests as condition of employment or membership in the labor organization; from denying employment or membership in labor organization based on genetic information; from altering the terms, conditions, or privileges of employment or membership in labor organization based on genetic information; and from terminating employment or membership in labor organization based on genetic information. Precludes from the term "preexisting condition" genetic information absent diagnosis of condition related to that information. Prohibits, with certain exceptions, genetic testing for insurance carrier purposes.

NEW HAMPSHIRE

N.H. Rev. Stat. Ann. §141-H:3-5.

Prohibits genetic testing by employers, labor organizations, employment agencies, and licensing agencies. Bars health insurers from requiring or requesting genetic testing.

NEW JERSEY

N.J. Rev. Stat. Ann. §10:5-44.
N.J. Rev. Stat. Ann. §10:5-12.
N.J. Rev. Stat. Ann. §§17:48E-15.2, 17B:26-3.2, 17B:27-36.2, 17B:27-54, 17B:27-57, 17B:27A-2.

Bars collection, retention, and disclosure of genetic information without individual's authorization. Prohibits employers from refusing to hire based on individual's genetic information or refusal to submit to genetic test or disclose test results, and from barring from employment, discharging, and requiring retirement based on genetic information or a refusal to submit to genetic testing. Prohibits discrimination based on genetic information with regard to issuance or setting of insurance rates.

NEW MEXICO

N.M. Stat. Ann. §§24-21-3, -4.

Bars persons from obtaining genetic information or samples of genetic analysis without obtaining individual's informed written consent. Bars discrimination by insurers in connection with life insurance, disability income, or long-term insurance based on genetic analysis, genetic propensity, or genetic information, unless use of genetic analysis, propensity, or information in underwriting is based on sound actuarial principles or related to reasonably anticipated experience.

NEW YORK

N.Y. Civ. Rights Law §48-a.
N.Y. Exec. Law §§292, 296.
N.Y. Ins. Law §3232.

Prohibits employers from denying otherwise qualified employees/applicants equal opportunities to obtain and/or maintain employment and to advance in position based on genetic disorder. Bars employers from refusing to hire or otherwise discriminating against individuals in terms of employment due to genetic predisposition or carrier status. Prohibits insurers from treating genetic Information as preexisting condition absent diagnosis of condition related to that information.

NORTH CAROLINA

N.C. Gen. Stat. §95-28.1A.
N.C. Gen. Stat. §58-3-215.

Prohibits employment discrimination based on genetic information. Bars insurers from raising premiums or contribution rates or charging higher premiums for group health benefit plans based on genetic information, and from refusing to issue or deliver plans based on genetic information.

NORTH DAKOTA

N.D. Cent. Code §26.1-36.4-03.1.

Precludes treating genetic information as preexisting condition exclusion absent diagnosis of condition related to that information.

OHIO

Ohio Rev. Code Ann. §§1751.18,.64.
Ohio Rev. Code Ann. §3924.27.

Bars health insurers from canceling or failing to renew coverage of subscribers/enrollees because of genetic information (a health status-related factor), and from requiring genetic screening or testing to process applications for coverage or to determine eligibility. Bars group health benefit plans and carriers offering health insurance coverage in connection with group health benefit plans from requiring, as condition of enrollment or continued enrollment, payment of greater premiums or contributions based on genetic information.

OKLAHOMA

Okla. Stat. Ann. tit. 36, §§3614.1-2, -4.

Prohibits insurers from requiring individuals or their family members to submit to genetic testing to determine eligibility for or renewal of coverage. Bars employers from obtaining or using employees'/applicants' genetic tests or genetic information or requiring genetic tests or genetic information in order to distinguish between, discriminate against, or restrict any right or benefit otherwise due to employees/applicants.

OREGON

Or. Rev. Stat. §§659.036, 715.
Or. Rev. Stat. §746.135.

Bars employers from obtaining genetic information from individuals or their DNA samples without first obtaining informed consent. Prohibits employers from using genetic information of employees, applicants, or blood relatives to discriminate against or restrict any right or benefit otherwise due. Prohibits using genetic information to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms and conditions of, or otherwise affect any policy for hospital or medical expenses.

PUERTO RICO

 

As of August 2003, Puerto Rico had no laws barring use of genetic tests in insurance or employment.

PENNSYLVANIA

 

As of August 2003, Pennsylvania had no laws barring use of genetic tests in insurance or employment.

RHODE ISLAND

R.I.Gen. Laws §28-6.7-1.

Prohibits employers and employment agencies from requesting, requiring, or administering genetic tests as condition of employment. Bars employers from affecting terms, conditions, or privileges of employment or terminating employment based on genetic test results. Prohibits persons from selling or interpreting for employers and employment agencies genetic test results of employees/applicants.

SOUTH CAROLINA

S.C. Code §38-93-20.

Prohibits insurers from discriminating on basis of any genetic information obtained or requests for genetic services.

SOUTH DAKOTA

S.D. Codified Laws §58-17-84.
S.D. Codified Laws §58-18B-27.
S.D. Codified Laws §60-2-20.

Bars treating genetic information as preexisting condition exclusion absent diagnosis of condition related to that information. Prohibits small employer carriers from establishing eligibility for coverage or renewal of coverage based on genetic information. Bars, with certain exceptions, employers from using genetic information to distinguish between or discriminate against employees/applicants.

TENNESSEE

Tenn. Code Ann. §§56-7-2703, -2804.

Prohibits insurance providers from denying, canceling, and varying the premiums, terms, or conditions for health insurance coverage on basis of individuals' or family members' requests for genetic services or their receiving such services. Bars providers of group health insurance from establishing eligibility rules based on genetic information.

TEXAS

Tex. Ins. Code Ann. §§26.49-.90.
Tex. Lab. Code Ann. §21.402(a)-(d).

Prohibits large and small employer insurance carriers from treating genetic information as preexisting condition absent diagnosis of condition related to that information. Bars employers, labor organizations, and employment agencies from (1) failing or refusing to hire, discharging, and otherwise discriminating against employees, applicants, and labor organization members based on their genetic information or refusal to submit to genetic testing, and (2) limiting, segregating, or classifying them so as to deprive them of employment opportunities or otherwise affect their status.

UTAH

Utah Code Ann. §§26-45-103, -104.

Bars employers, in connection with a hiring, promotion, retention, or other related decision, from accessing or otherwise considering private genetic information, from requesting or requiring individuals to consent to release such information, from requesting or requiring employees/applicants or their blood relatives to submit to genetic testing, and from inquiring into or otherwise considering fact that they took or refused to take a genetic test. Bars health care insurers, in connection with the offer or renewal of an insurance product or in the determination of premiums, coverage, renewal, cancellation, or any other underwriting decision from considering genetic information about asymptomatic individuals; requesting or requiring asymptomatic individuals to consent to release such information; requesting or requiring asymptomatic individuals or their blood relatives to submit to genetic test; and inquiring into or considering fact that they took or refused to take genetic test

VERMONT

Vt. Stat. Ann. tit. 18, §§9333-334.

Bars employers from using genetic testing results or genetic information of employees/applicants or their family members as condition of, or to affect the terms, conditions, or privileges of employment. Bars insurers from requiring genetic testing as condition of coverage.

VIRGINIA

Va. Code Ann. §38.2-508.4.

Prohibits (1) Insurers providing hospital, medical, and surgical or major medical coverage on expense-incurred basis, (2) corporations providing health services plans, and (3) health maintenance organizations in proposing to issue, reissue, or renew any policy, contract, or plan of accident and sickness insurance, except disability income insurance, from terminating, restricting, limiting, or otherwise applying conditions to coverage based on individual's genetic information or request for genetic services. It is also an unfair trade practice to otherwise limit coverage based on genetic information, or to establish different premium rates for coverage.

WASHINGTON

 

As of August 2003, Washington had no laws barring use of genetic tests in insurance or employment

WEST VIRGINIA

W. Va. Code §33-16-3k.

Bars use of genetic information as preexisting condition exclusion absent diagnosis of condition related to that information.

WISCONSIN

Wis. Stat. Ann. §111.372.
Wis. Stat. Ann. §631.89.

Bars employers, labor organizations, employment agencies, or licensing agencies from offering benefits conditioned on individual taking genetic test, and from (1) soliciting, requiring, or administering genetic tests as condition of employment, labor organization membership, or licensure and (2) affecting terms, conditions, or privileges of employment or labor organization membership, as well as licensure or termination of employment or labor organization membership, baaed on fact that individual took genetic test. Bars persons from selling or interpreting genetic tests for employers, labor organizations, employment agencies, and licensing agencies. Prohibits insurers from requiring or requesting individuals or their family members to submit to genetic tests; requiring or requesting disclosure of genetic testing and test results; conditioning insurance coverage or health care benefits on genetic testing; and considering in the determination of rates or any other aspect of insurance coverage or health care benefits whether individual or family member has obtained a genetic test.

WYOMING

Wyo. Stat. Ann. §26-19-107.

Prohibits policy of group or blanket disability insurance from establishing eligibility rules, denying eligibility,   adjusting premium rates, or adjusting contribution rates based on genetic testing information, or requesting or requiring genetic information. Bars insurers offering policy from denying eligibility and adjusting premium and contribution rates based on genetic testing information concerning individual or family member. Insurers may request but not require, genetic testing information if needed for diagnosis, treatment, or payment. As part of request insurers must describe procedures in place to safeguard confidentiality of information.