Genetic health data need privacy protection

The Chicago-based American Health Information Management Association (AHIMA) recently issued a statement urging caution in protecting the confidentiality of individual health information.

The 40,000-member organization applauded the Human Genome Project on completing the working map of the human genome but emphasized the need for confidentiality legislation.

"The Human Genome Project offers the promise of better health and will profoundly affect how medicine is practiced in the next century," said AHIMA president-elect Barbara P. Fuller, JD. Fuller also is a senior policy analyst at the National Human Genome Research Institute at the National Institutes of Health.

AHIMA calls for legislation

AHIMA has called for confidentiality legislation that would protect health information for several years. The group says the misuse of any individually identifiable medical information could be destructive to the health and well-being of patients. The organization also says a breach of confidentiality could lead to a person being discriminated against in employment, insurance, and health care.

"Fear of participating in genetics research can be expected to increase if the research information can be used against the participant," stated Fuller. AHIMA pledges to continue working with Congress and the Clinton administration to pass meaningful legislation that would protect the confidentiality of all health information.