Protecting Privacy in the Behavioral Genetics Era
*Harold J. Bursztajn, M.D. Richard Sobel, Ed.D & Amy
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."  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." 
How to Protect Genetic Information?
(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. 
(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."  "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.  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. 
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.  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. 
(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.  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. 
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,"  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."  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. 
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. 
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.  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.  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.  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  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...,"  as
well as the "predictable" and "unaltered course" of
the disease.  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. 
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.  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." 
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.  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."  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.  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." 
Furthermore, the U.S. Supreme Court in Sutton v. United Air Lines,
Inc.  stated that the ADA requires that "a
person be presently—not potentially or hypothetically—substantially
limited."  The Court also emphasized that
the determination as to whether an individual is disabled is an "individualized
inquiry."  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." 
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
(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).  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,  (2)
requiring participants to pay a premium or contribution greater than
that for similarly situated participants on the basis of genetic information,  and
(3) treating genetic information as a preexisting condition absent a
diagnosis of the condition related to such information.  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. 
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 —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.  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. 
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.  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.  To
protect against improper use and disclosure of PHI, the entities must
develop and implement written privacy policies and procedures. 
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  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. 
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. 
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.  Medicine,
from its beginnings, has been concerned with protecting patient privacy.  Informational
consent is essential to protecting patient confidentiality. 
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.  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.  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.  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.  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. 
*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 email@example.com.
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
Jeanne Cummings & Glenn R. Simpson, "Bush
Readies Plan for Law to Prevent Genetic Discrimination," Wall.
St. J., June 26, 2001, at B2.
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).
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.
42 U.S.C. §12112(d)(2).
EEOC, No. 915.002, Enforcement Guidance:
Disability-Related Inquiries and Medical Examinations of Employees
Under the Americans with Disabilities Act (June 27, 2000),
42 U.S.C. §12112(d)(3)(A).
Id. at §12112(d)(B).
Id. at §12112(d)(B)(i)-(iii).
Id. at §12112(d)(B)(4)(A).
Id. at §12102(2).
EEOC, No. 902.8, Section 902: Definition
of the Term "Disability" (Mar. 1995), at http://www.eeoc.gov/policy/docs/902cm.html.
EEOC v. Burlington N. & Santa Fe. R.R.,
No. 02-C-0456 (E.D. Wis. June 28, 2002).
524 U.S. 614 (1998).
Id. at 639-40.
Pauline T. Kim, "Genetic Discrimination,
Genetic Privacy: Rethinking Employee Protections for a Brave New
World," 96 NW. U. L. Rev. 1497, 1528-29 (2002).
524 U.S. at 661.
EEOC v. Rockwell Int'l Corp., 243 F.3d 1012
(7th Cir. 2001).
29 C.F.R. §1630.2(j)(3)(ii)(Ą)-(B).
Rockwell, 243 F.3d at 1018.
527 U.S. 471 (1999).
Id. at 482.
Kim, supra note 22, at 1528.
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.
45 C.F.R. §160.103.
"Focus On: Employee Privacy Under HIPAA," 6 Employment
L. Rep. (Newsletter) 4 (Oakstone Legal & Business Publishing,
Inc. July 2003).
45 C.F.R. §164.508.
Id. at §l64.502(b), §164.514(d).
Id. at §164.530(i). See http://www.hhs.gov/ocr/hipaa.
S. 1053, 108th Congress, 1st Session (2003). See http://thomas.loc.gov/cgi-bin/query/z?c108:S.1053:.
See "Bill Protects Genetic
Discrimination: Compromise Might Spur Passage," 26 Mental
Health L. Rep. 59 (Business Publishers, Inc. June 2003).
Jaffee v. Redmond, 518 U.S. 1 (1996).
George Annas, "HIPAA Regulations—A
New Era of Medical-Record Privacy," 348 New Eng. J. Med. 1486-90
Charles Welch, "Sacred Secrets—The
Privacy of Medical Records," 345 New Eng. J. Med. 371-72
Richard Sobel, "No Privacy for All?
Serious Failings in the HHS Medical Records Regulations," 5 J.
Biolaw & Bus. 45-48 (2002).
Erving Goffman, The Presentation of
Self in Everyday Life (Doubleday 1959): Anthony Zarrinpar, "Psychiatry & Stigmatization," 287 JAMA 1856(2002).
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
Id. at 437.
Bursztajn et al., .supra note 50.
Knut Fylkesnes & Torgeir Knag. "Informed
Consent as Part and Parcel of the Scientific Inquiry," 361 Lancet 2171-72
(June 28, 2003).
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
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.
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
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
1998 Cal. Legis. Serv. ch. 521 (SB
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.
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.
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.
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."
Fla. Stat. Ann. §448.075.
Fla. Stat. Ann. §§627.4301, 627.65625, 641.31071, 641.31073,
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.
Ga. Code Ann. §§33-54-1 through
Bars accident and sickness insurance
companies, health maintenance organizations, and managed
care organizations from denying coverage on basis of genetic
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
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.
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.
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 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
Kan. Stat. Ann. §40-2259.
Prohibits insurance companies, health
maintenance organizations, and other corporations from conditioning
coverage on individuals and their family members undergoing
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.
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.
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.
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.
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.
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.
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.
As of August 2003, Mississippi had
no state laws barring use of genetic tests in insurance or
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.
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.
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.
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,
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.
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
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.
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.
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.
N.C. Gen. Stat. §95-28.1A.
N.C. Gen. Stat. §58-3-215.
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.
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
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.
Okla. Stat. Ann. tit. 36, §§3614.1-2,
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.
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.
As of August 2003, Puerto Rico had
no laws barring use of genetic tests in insurance or employment.
As of August 2003, Pennsylvania
had no laws barring use of genetic tests in insurance or
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.
S.C. Code §38-93-20.
Prohibits insurers from discriminating
on basis of any genetic information obtained or requests
for genetic services.
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.
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.
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 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
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.
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.
As of August 2003, Washington had
no laws barring use of genetic tests in insurance or employment
W. Va. Code §33-16-3k.
Bars use of genetic information
as preexisting condition exclusion absent diagnosis of condition
related to that information.
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.
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