WASHINGTON, D.C.-----Eleven international biotechnology organizations have endorsed the Biotechnology Industry Organization's (BIO) policy statement regarding genetic privacy, calling for strong protections against the misuse of personal medical information including data derived from genetic diagnostic tests.
"This is an unprecedented expression of concern by a global industry for the genetic privacy of every individual," said BIO President Carl B. Feldbaum. "It is our intention and expectation that this strong endorsement of genetic privacy will contribute to the rights and well-being of individuals all over the world. BIO will use this international consensus," Feldbaum stated, "in our continuing efforts to gain legislative support for genetic privacy."
"Also, I have today informed President Clinton through White House staff of this global 'statement' and will enlist his as well as Congressional support. Recall that in his commencement speech at Morgan State University on May 19, President Clinton said that 'none of our discoveries (from science) should be used to label or discriminate against any group or individual.'"
"He added that 'genetic testing has the potential to identify hidden inherited tendencies toward disease and spur early treatment. But that information could also be used, for example, by insurance companies and others to discriminate against and stigmatize people.' "We whole heartedly agree," said Feldbaum. "This endorsement may also be valuable to foreign biotech organizations seeking similar privacy laws or regulations in their respective nations."
On September 18, 1996, the BIO Board of Directors approved a policy statement regarding genetic privacy on behalf of BIO's 720 member companies, state organizations and educational institutions. The statement stresses that individuals must be treated with respect in the way their personal medical and genetic information is acquired and used. It points out that genetic testing provides important opportunities to improve human health.
These tests can be used to diagnose the presence of disease. Equally, they can provide information that can be used to reduce the risk of future disease and enable earlier and more effective treatment if and when disease occurs. These tests can advise doctors that patients may need life-style changes in their diet or the need for increased exercise. The statement also highlights the need to protect the privacy of, and safeguard against misuse of, all personal medical information, regardless of the method by which it is obtained.
A number of legislative proposals designed to protect against genetic discrimination have already been introduced in the U.S. Congress and several state legislatures. Senator Pete Domenici (R-NM) currently has a genetic privacy bill, but its scope of protection needs to be broadened to include all medical information, not just genetic information, Feldbaum pointed out.
"So much of what our industry does is dedicated to improving the quality of life for all people. It is only natural that we speak out in favor of protection for the rights of each person, particularly when the application of biotechnology is involved," said Feldbaum.
The 11 international organizations that expressed their official support for BIO's policy statement regarding genetic privacy are: the Advanced Biotechnology Center (Italy), the All India Biotech Association, the Australian Biotech Association, the Belgian BioIndustries Association, the Biominas Foundation (Brazil), the Genetic Engineering Biotechnology Research Institute (Egypt), the Hong Kong Institute of Biotechnology Ltd., the Mexican Association of Biotechnology Firms, the Mongolian Biotechnology Association, the National Steering Committee for Biotechnology (Israel), and the New Zealand Biotechnology Association.
The Biotechnology Industry Organization (BIO) represents over 720 biotechnology companies, academic institutions, and state biotechnology centers in 47 states and more than 20 nations. BIO members are involved in the research and development of health care, agricultural and environmental biotechnology products.