The House Judiciary Subcommittee on the Constitution held a September 12 hearing to discuss privacy concerns about the collection, use, and exchange of genetic information by employers and insurers. Subcommittee Chair Steve Chabot (R-OH) opened the hearing, noting that “as technology advances, scientists will be able to predict human susceptibility to disease with a high level of accuracy.” He added, “While scientific developments in ‘genomics’ will aid society in many ways, many fear the possibility of discrimination at the hands of employers and insurers.”
Witnesses testified both in support of, and in opposition to, federal legislation prohibiting genetic discrimination in health insurance and the workplace. While the majority of the witnesses agreed that genetic discrimination is not currently rampant, they disagreed as to the potential for such discrimination.
Dr. John Rowe of Aetna, Inc. told the subcommittee that there are two distinct issues at play. “One is assuring that genetic information is not used for discriminatory purposes in insurance. The second is the use of genetic information as part of a benefit covered by health insurance, the issue of medical management.”
Noting that some have suggested prohibiting insurers from obtaining genetic information as the safest way to ensure privacy, Dr. Rowe said, “This approach is both unnecessary and counter-productive and will impair insurers’ capacity to provide appropriate services to its members.” As an example, he discussed a genetic test for the familial form of colon cancer, saying that individuals with this gene benefit from frequent screenings. “If the insurance company knows that the individual is at high risk due to a genetic link, the individual will be able to obtain coverage for preventive screening at more frequent intervals than recommended for the general population,” he said.
Acknowledging a “a hodgepodge of state regulations,” Dr. Rowe added, “I believe that there should be a standard, whether it’s established by the industry, as we’ve tried to do, or whether it is legislated.” Aetna recently announced guidelines, which it hopes will be adopted by the insurance industry, for the coverage of genetic testing and the use of the resulting information.
Tom Miller of the Cato Institute told the subcommittee that there “is little, if any, evidence that health insurers are using or likely to use pre-symptomatic genetic information in their medical underwriting,” adding that the issue of genetic discrimination is “usually built on assumptions about the future and what some observers believe private insurers and employers might do.…”
In discussing some of the obstacles to legislating the use of genetic information, Mr. Miller said, “There is no clear line that separates genetic data from other kinds of personal health information.” He added, “Moreover, the sources of legally protected information might be obtained from many current and commonly accepted medical practices that do not involve explicit ‘tests’ of one’s genetic material. For example, personal medical histories, family medical histories, routine physical exams, and blood pressure tests all might convey predictive health information that could be linked to genetic factors.”
Joanne Hustead of the Health Privacy Project at Georgetown University discussed the extent to which existing federal laws protect the privacy of genetic information. Currently, insurers are regulated by the 1996 Health Insurance Portability and Accountability Act (HIPAA), and employers are regulated by the Americans with Disabilities Act (ADA).
Ms. Hustead said that “there are significant limits to what the HIPAA privacy regulation can and does accomplish,” adding, “The HIPAA privacy regulation does not generally prohibit the entities subject to the privacy regulation from collecting genetic information from individuals or from requiring people to provide genetic information or undergo genetic tests.”
On the employment side, Ms. Hustead said, “Unfortunately, the ADA permits employers to collect more medical and genetic information than is necessary to assess whether an individual can perform essential job functions.” She encouraged Congress to enact legislation that would provide “additional and significant privacy protections.”
Speaking from a clinician’s perspective, Dr. Deborah Peel of the American Psychoanalytic Association and the Mental HealthCARE Foundation emphasized the importance of privacy, particularly in the field of psychiatry. “Treatment cannot be effective if privacy is not guaranteed because patients do not feel safe to fully disclose what is on their minds,” she said. “Most patients I see in my office pay out-of-pocket for treatment in order to ensure privacy,” she added, saying, “Some even pay cash, fearing bank disclosures. Many request sample medications for the same reasons.”
