BIO urges privacy measures that allow beneficial’ uses of medical information
By LISA SEACHRIST
Healthcare InfoTech Washington Editor
WASHINGTON With biotechnology and genetic advances creating the opportunity to know ever more specific medical information about patients, the Biotechnology Industry Organization (BIO; Washington) has voiced its opposition to using that information as a means of discriminating against a person's ability to get health insurance or employment.
In a sharply worded policy statement, BIO’s board of directors announced that they "deplore any discriminatory practices that may lead people to avoid obtaining information the could be important, perhaps vital, to their well-being for fear that others may improperly use this information."
The statement also emphasized that BIO is opposed to any attempts to make a special case out of genetic information, instead preferring to see efforts to prohibit the misuse of all medical information. BIO maintains that genetic information is only one part of the spectrum of medical information, and can’t be easily separated from the whole of medical information. Gender, after all, is genetically determined.
"The idea was really to address discrimination in its broadest context," said Suzanne Tomlinson, bioethics counsel for BIO. "We really didn’t want to single out genetic information from the whole of medical information. Our members are very concerned that people may be afraid that their medical information might be used against them."
Congress will be considering the issue of medical privacy this year as a result of a statutory requirement built into the Health Insurance Portability and Accountability Act (HIPAA) of 1996. If the legislators fail to enact medical privacy legislation by August, the Secretary of the Depart ment of Health and Human Services will promulgate regulations covering the issue. Congress has already voiced its desire to weigh in on any medical privacy protections.
As much as privacy needs to be protected, privacy is not absolute. Many people, such as law enforcement officials and medical researchers, have legitimate reasons to access medical records. Congress will go to battle over whether law enforcement officers need warrants to access medical records. BIO is focusing its concern over whether biomedical researchers will have adequate access to such records.
"We haven’t come out with a specific proposal; we just want to make sure that any legislative proposal will guarantee access to the information for beneficial uses," Tomlinson said.
Biomedical researchers use medical information including genetic information to determine which patients are likely to benefit from certain therapies. With the growing interest in pharmacogenomics, it will be important to establish whether certain drugs work better for patients with certain genetic profiles.
"If you can actually get a better understanding of the drug from this sort of medical information, you can target the drug to patients better," Tomlinson said. "That could have a positive impact on reimbursement."
BIO is urging legislators to determine whether protections found in the Americans with Disabilities Act, the Civil Rights Act and HIAPA provide adequate protections from discrimination based on medical information. If these laws cannot be invoked to provide satisfactory deterrents to the misuse of medical information, BIO would support only proposals that make no special protections for genetic information, and that permit access to the information by biomedical researchers.
In addition, BIO calls for any measure to provide a blanket set of federal protections to avoid the "patchwork quilt" of privacy protections that currently exist.
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