A. New Hampshire Law
New Hampshire is one of several states with a law that addresses the conditions under which genetic testing can be used, especially with reference to the use of genetic testing in employment situations and health insurance. The law is located at R.S.A. 141-H. "Genetic testing is defined by the statute as follows:
"[g]enetic testing" means a test, examination, or analysis which is generally accepted in the scientific and medical communities for the purpose of identifying the presence, absence, or alteration of any gene or chromosome, and any report, interpretation, or evaluation of such a test, examination, or analysis, but excludes any otherwise lawful test, examination, or analysis that is undertaken for the purpose of determining whether an individual meets reasonable functional standards for a specific job or task.
The statute provides that no person in the State of New Hampshire shall be required to undergo genetic testing as a condition of doing business with another person. The effect of this statute is to prohibit genetic testing in a variety of everyday business encounters. Genetic testing for purposes of establishing paternity, testing newborns for metabolic disorders or for criminal investigations and prosecutions are excluded from the prohibition of genetic testing, however. Genetic testing can be performed only with the written and informed consent of the individual to be tested. Test results must be provided to the individuals tested. It is unlawful under the statute for a person to disclose to any other person the fact that an individual has undergone a genetic test or the results of the test without the written consent of the individual tested. The text of the statute is as follows:
I. Except as otherwise provided in this chapter, no individual or member of the individual's family shall be required to undergo genetic testing as a condition of doing business with another person.
II. Except as required to establish paternity under RSA 522, or as required to test newborns for metabolic disorders under RSA 132:10-a, or as required for purposes of criminal investigations and prosecutions, or as is necessary to the functions of the office of chief medical examiner, no genetic testing shall be done in this state on any individual or anywhere on any resident of this state based on bodily materials obtained within this state, without the prior written and informed consent of the individual to be tested. The results of any such test shall be provided only to those persons approved in writing by the individual. No person shall refuse to perform genetic testing, or to arrange for genetic testing to be performed, or to do business with an individual, solely because the individual to be tested refuses to consent to providing the test results to some or all persons.
III. Except as provided in paragraph II, no person shall disclose to any other person that an individual has undergone genetic testing, and no person shall disclose the results of such testing to any other person, without the prior written and informed consent of the individual.
A separate section of the statute addresses genetic testing and employment. It generally prohibits discrimination in employment with respect to genetic testing. It provides as follows:
I. No employer, labor organization, employment agency, or licensing agency shall directly or indirectly:
(a) Solicit, require or administer genetic testing relating to any individual as a condition of employment, labor organization membership, or licensure.
(b) Affect the terms, conditions, or privileges of employment, labor organization membership, or licensure or terminate the employment, labor organization membership, or licensure of any individual based on genetic testing.
II. Except as provided in paragraph IV of this section, no person shall sell or otherwise provide to an employer, labor organization, employment agency or licensing agency any genetic testing relating to an employee, labor organization member or licensee or to a prospective employee, labor organization member or licensee.
III. Any agreement between an employer, labor organization, employment agency, or licensing agency and an individual offering employment, labor organization membership, licensure, or any pay or benefit to that individual in return for taking a genetic test is prohibited.
IV. This section shall not prohibit the genetic testing of an employee who requests to undergo genetic testing and who provides written and informed consent to genetic testing for any of the following purposes:
(a) Investigating a worker's compensation claim under RSA 281-A.
(b) Determining the employee's susceptibility or level of exposure to potentially toxic chemicals or potentially toxic substances in the workplace, if the employer does not terminate the employee, or take any other action that adversely affects any term, condition, or privilege of the employee's employment, as a result of genetic testing.
V. This section shall not prohibit or limit genetic testing for evidence of insurability with respect to life, disability income, or long-term care insurance under the terms of an employee benefit plan.
Yet another section of the statute addresses the permissible uses of genetic testing in the health insurance industry. This section of the statute provides as follows:
A health insurer in connection with providing health insurance shall not:
I. Require or request directly or indirectly any individual or a member of the individual's family to undergo genetic testing.II. Require or request directly or indirectly any individual to reveal whether the individual or a member of the individual's family has undergone genetic testing or the results of the testing, if undergone by the individual or a member of the individual's family.
III. Condition the provision of health insurance coverage or health care benefits on whether an individual or a member of the individual's family has undergone genetic testing or the results of the testing, if undergone by the individual or a member of the individual's family.
IV. Consider in the determination of rates or any other aspect of health insurance coverage or health care benefits provided to an individual whether an individual or a member of the individual's family has undergone genetic testing or the results of the testing, if undergone by the individual or a member of the individual's family.
Although the use of genetic testing is severely restricted in health insurance, a subsequent section of the statute allows limited use of genetic testing for purposes of life, disability income or long-term care insurance.
I. Except as provided in paragraph II of this section, the provisions of this chapter shall not apply to the provision of life insurance, disability income insurance, or long-term care insurance.
II. A person in the business of providing life, disability income, or long-term care insurance who obtains information with respect to any genetic testing of an individual or a member of the individual's family shall not use that information in writing a type of insurance coverage other than life, disability income, or long-term care insurance.
It should be noted that this section of the statute is currently the subject of debate by the New Hampshire House of Representatives. Representative Kurk has introduced a bill to prohibit the use of genetic testing for long-term care insurance and for certain life insurance policies.
Finally, the genetic testing statute allows a person to bring a civil lawsuit against anyone who violated the provisions of the statute. If successful, the person shall be awarded special or general damages of not less than $1,000 for each violation, and costs and reasonable legal fees.
B. Federal Law
I. Health Insurance Portability and Accessibility Act (HIPAA)
Pre-existing condition exclusions are often used by health insurers to deny payment of a member's health care expenses on the grounds that the condition necessitating the expenses preceded the health insurance. HIPAA specifically authorizes the use of pre-existing condition exclusions by health insurers offering group health insurance, but only if the exclusion meets certain criteria. HIPAA specifically protects individuals enrolled in health insurance plans who have undergone genetic testing prior to becoming enrolled in the plans and whose test results demonstrate a greater risk for developing a genetic condition. HIPAA accomplishes this protection by providing that "[g]enetic information shall not be treated as [a pre-existing condition as defined by the statute] in the absence of a diagnosis of the condition related to such information." Thus, the mere fact that a genetic test has disclosed an increased risk of disease cannot form the basis for denying payment of medical bills related to the condition under the "pre-existing condition exclusion" unless the condition was diagnosed within 6 months of enrollment in the plan.
II. Americans with Disabilities Act (ADA)
The ADA prohibits discrimination in any aspect of employment on the basis of a disability. To rely on the ADA for protection, an individual must come within at least one part of the three-part definition of an individual with a disability. With respect to an individual, the term "disability" means:
(a) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;
(b) a record of such impairment; or
(c) being regarded as having such an impairment.
The ADA does not specifically address whether employment discrimination based upon genetic information disclosing a potential disability is unlawful. However, in 1995, the Equal Employment Opportunity Commission (EEOC) issued an opinion on the issue of whether an unexpressed genetic condition is a "disability" under the ADA. The EEOC opined that it is, and by doing so effectively held that an employer cannot discriminate against an employee on the basis of an undisclosed genetic condition. The ADA has significant shortcomings in its ability to adequately protect employees at increased risk of developing genetically transferrable condition. For instance, the ADA allows the use of "preplacement medical examinations," but does not limit the scope of such examinations. Moreover, employees have no right to know what examinations are being performed, or, if their employment offers are subsequently revoked, the reason for the revocation. Some commentators have observed that these limitations of the ADA allow for surreptitious and unlawful discrimination, as well as unnecessary disclosure of sensitive medical information.
C. Lawsuits Involving Genetics
With the increased availability of genetic testing, there has been a corresponding increase in the amount of litigation involving genetics. The last several years has witnessed a rise in medical malpractice cases against doctors. Some patients have sued their doctors for negligently performing genetic tests. See e.g., Munro v. Regents of the University of California, 215 Cal.App.3d 977 (1989)(dismissing claim for alleged negligence in failing to test plaintiff for Tay Sach's disease). Others lawsuits have been brought against doctors by the relatives of a patient diagnosed with a genetically transferable disease for failing notify the relatives of the genetically transferable nature of the disease. In 1995, for example, the adult daughter of a woman who was diagnosed with and subsequently died of medullary thyroid carcinoma, a genetically transferable disease, sued her mother's doctor for failing to warn her that she would inherit the disease. See Pate v. Threlkel, 661 So.2d 278 (1995). The Florida supreme court ruled that, if the prevailing standard of care requires the doctor to warn the relatives of patients with genetically transferable disease, the doctor could be found liable for monetary damages. See also Safer v. Estate of Pack, 677 A.2d 1188 (1996)(in which plaintiff alleged that her father's doctor failed to warn her of father's diagnosis of multiple polyposis, a genetically transferable condition, and court held that the doctor had a duty to warn the plaintiff that she was at increased risk of developing multiple polyposis).
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