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How can genetic confidentiality be ensured?
Because of public concern about potential discriminatory misuse of medical information, BIO supports federal legislation to protect the confidentiality of individuals' medical information, including the results of genetic tests. BIO believes that information resulting from clinical genetic testing and genetic research must be treated responsibly and safeguarded from discriminatory misuse. Federal legislation would standardize protections across the country and thus avoid the difficulties posed by the emergence of a patchwork of different state laws.
Although patients' rights must be protected, it is also important to ensure that regulations or laws do not prevent medical researchers from sharing data from which patient-identifying details have been stripped. BIO opposes further restrictions on the use of encoded data that provide no threat to patient confidentiality
Because genetic tests are a type of medical test, BIO believes they should not be regulated differently from other medical tests. The Clinical Laboratory Improvement Amendments of 1988 provide a regulatory system that oversees all laboratories performing clinical testing. BIO believes this existing system can be adapted to provide appropriate protection of patients' genetic and other medical information.
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