BIO Calls for Strong Protections for Genetic Information

(WASHINGTON, DC)...The Biotechnology Industry Organization (BIO) has called for strong protections against the misuse of personal medical information including data derived from genetic diagnostic tests. The action came in a statement on medical privacy adopted recently by the BIO board of directors, on behalf of the organization's 680 member companies and educational institutions.

"Biotechnology is being used to develop breakthrough diagnostic tests and new medicines to treat previously incurable diseases with genetic components," explained BIO President Carl B. Feldbaum. "Our statement on privacy is an unprecedented expression of concern by an entire industry for the genetic privacy of every individual. In this case, the privacy of the one must dictate the actions of the many. People must be treated with respect in the way their personal medical and genetic information is acquired and used."

The BIO statement on medical privacy noted that "insight into the genetic and other biological bases of disease holds great promise for alleviating suffering associated with many human diseases. BIO believes that information resulting from genetic testing and genetic research must be treated responsibly, and safeguarded against its discriminatory misuse, if these new advances in medical knowledge are to achieve their full potential for improving human health."

BIO called for applying the same stand ards of confidentiality and nondiscrimination for all personal medical information, whether it is gathered using genetic tests or any other diagnostic process.

The statement also pointed out that "even something as basic as a family medical history, which provides the physician with information critical to the diagnosis, prevention and treatment of disease, can be misused to discriminate against an individual or a family."

BIO reiterated its support for the recently enacted Kassebaum-Kennedy law that prohibits insurance companies from denying coverage on the basis of an individual's medical history.

The Biotechnology Industry Organization (BIO) represents more than 680 biotechnology companies, academic institutions and state biotechnology centers. BIO members are involved in the research and development of health care, agricultural and environmental biotechnology products.