Legal Issues

Common-Law Protection of Genetic Information Privacy

Some protection for genetic information privacy is offered by common law tort
remedies. The common law right of privacy prevents public disclosure of private facts. Most courts have, however, found that such a claim requires widespread disclosure to the public, which will not occur in most cases involving the release of personal genetic information. Another restrictive element of the public disclosure tort is that most courts require disclosure to someone without a "legitimate interest" in the information. Some courts consider employers to have such a legitimate interest in much of their worker's medical information.

The tort right of privacy also prevents intentional intrusions upon the private affairs or concerns of an individual. Such intrusions, however, must be "highly offensive." Miller v. Motorola illustrates the weakness of the intrusion tort action for protecting genetic information privacy. In this case, an employer disclosed sensitive medical information to the plaintiff's co-workers. The Illinois court found no "intrusion" on the plaintiff because she had "voluntarily provided" the information to her employer.

Statutory Protection of Genetic Information Privacy

United States Constitution

The act of genetic testing raises the issue of Fourth Amendment protection from unreasonable bodily intrusions. However, the Fourth Amendment provision
against unreasonable searches and seizures is inapplicable to private organizations
in the absence of state action. The effects of genetic testing may be attacked under two Fourteenth Amendment doctrines as well. The first is the Fourteenth Amendment's substantive due process protection of the right of privacy. The second is the guarantee of equal protection. Some genetic diseases are primarily confined to certain racial groups, raising the possibility of creating a suspect class. In addition, there may be a question of restrictions on procreative choice resulting from directive counseling. Such counseling could infringe fundamental liberty rights. Finally, the act of genetic testing may be contrary to certain religious beliefs. Mandatory genetic testing programs may violate the First Amendment's guarantee of religious freedom.

When the government collects personal data, a constitutional right to informational privacy applies to the data collected. This right was first identified in Whalen v. Roe, a case that involved medical data. Whalen concerned a New York State plan to collect and store information relating to the prescription of certain drugs that had both legitimate and illegitimate applications. In judging the constitutionality of this state scheme, the Supreme Court found that the United States Constitution included a right of informational privacy that prohibited "disclosure of personal matters" and protected "independence" in decision-making.

To check whether the nondisclosure interest had been violated, the Court examined the data security measures of New York. These measures included storing the prescription forms in a vault until their ultimate destruction; surrounding the room in which these data were received with a wire fence and protecting this area with an alarm system; and promulgating statutory and regulatory measures that prohibited disclosure to the public. The Court found such actions were well designed to ensure that the personal medical data collected by the state government would be kept from the public.

The second Whalen interest, independence in making certain types of important
decisions, was implicated by the patient's decision whether to acquire and use
needed medicine. Although the government's record-keeping had discouraged some use of the drugs in question, "the decision to prescribe, or to use" remained in the control of the physician and the patient. Therefore, the Court found that New York's data processing scheme did not violate interest of independence in decision making. The Whalen two-branch approach offers a model with potential for the protection of personal genetic information.

Unfortunately, lower courts analyzing governmental attempts to obtain or examine
medical information have done so primarily with reference to the first Whalen interest. Indeed, some courts have even viewed Whalen as a decision that sanctions all "legitimate" governmental requests for medical data. The independence of decision making interest identified in Whalen has been almost entirely absent from case law. Thus, although Whalen offers a potentially useful element in the overall structure of a genetic information privacy protection law, it has not led to vigorous protection of medical or genetic information privacy. Finally, in the absence of state legislation, private parties may conduct across-the-board genetic testing without the constitutional implications faced by federally funded programs.  Thus, private employers, insurers, and social organizations may test all applicants under existing law.

Americans With Disabilities Act[68]

The Americans With Disabilities Act ("ADA") serves to prevent discrimination against individuals with disabilities in critical areas like employment, housing, public
accommodations, education, transportation, health services, and access to public
services. If individuals subjected to genetic testing are discriminated against as a result of such testing, they are protected by the ADA because they are "perceived"
to be disabled. Thus, even though the genetic disorder may not manifest itself
physically to the point of limiting one or more of the major life activities of the
individual, any person who is believed to be disabled would be protected by the ADA.

However, as a defense, the ADA permits employers to use techniques like genetic testing to screen individuals to find out if they have disabilities that pose a significant threat to the health and safety of other workers. The ADA can provide some protection against discrimination resulting from genetic testing in employment and other federally funded areas. However, it does not address the use of genetic information in law enforcement, adoption, insurance, or confidentiality and privacy

The Human Genome Privacy Act[72]

The Human Genome Privacy Act ("HGPA") was introduced on September 17, 1990, to Congress by Representative John Conyers, Jr. (D-Mich.). The HGPA attempts to offer protection to genetic information by allowing greater individual control over the use and verification of genetic information.

First, the HGPA permits the individual to inspect any genetic information on himself or herself maintained by a government agency. Second, the HGPA allows an individual to request amendment of any personal genetic information maintained by the agency while granting the agency the right to refuse to amend. These provisions of the HGPA enable an individual to ensure that accurate results are maintained, and they also allow the individual to verify false positives and update his or her genetic database. Third, the HGPA requires all agencies maintaining genetic information to provide written notice of their practices, including the rights of an individual to inspect and amend genetic data. Section 143(a) of the HGPA provides that intentional and unauthorized disclosure, maintenance, or security of genetic information shall be punishable as a misdemeanor and carry a fine of up to $10,000 In addition, the HGPA provides declaratory and injunctive relief to individuals whose rights have been violated.

Requiring individuals to consent to disclosure of their information rather than simply notifying them of such disclosure would provide individuals with greater security and privacy. This provision would restrict the flow of genetic information and enable people to trace the source of leaked genetic data more easily. Disclosure without an individual's authorization is permitted under the HGPA only in medical emergencies, clinical-care circumstances, or adoption situations when "reasonable efforts to locate the individual" have failed, and when required by law.

While well intentioned and timely, the HGPA's effectiveness is doubtful. First, its
operative language is vague. How far must one go to prevent misuse, including
possible unlawful discrimination by third parties? The civil and criminal penalty
provisions in the HGPA do not address this issue. Although the HGPA provides
individuals with some autonomy in maintaining their genetic records, the HGPA
does not give any guidelines as to when and how individuals may amend their
records, or the use of the data before they are altered. The HGPA indicates that the
agencies holding genetic data are the sole arbiters of all requests for
information. This leaves the agencies with much discretion.

Our conclusion about the issues presented on this web site is presented here.

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