NBCC believes the protections should be the same for all medical research whether publicly or privately funded. At the same time, we would like to see the certificate of confidentiality strengthened so that no access is allowed to clinical research information. Much benefit to research could be obtained by giving research special privacy considerations. It may make it easier to distinguish research access from clinical chart access. We are concerned that this language is overly broad, and would allow an insurer to share information with other divisions within the same company.
Most insurance companies are complex financial institutions.
This provision would allow the same company that pays for health care to share across divisions, such as life insurance, financial planning, disability, etc. Such disclosure can cause significant harm to individuals, including stigmatization and discrimination by health insurers and employers. We also believe that the bill should include prohibitions against discrimination by employers, making it unlawful to refuse to hire, to discharge, or to deprive individuals of employment opportunities based on genetic information, including an individual's request for genetic services. It should also extend such protections against genetic discrimination to health insurance and prohibit health plans from denying, canceling, refusing to renew, or changing the terms, premiums or conditions based on genetic information. Everyone cheered the discovery of the BRCA 1 and BRCA 2 but if we are ever going to have the knowledge for this discovery to make a difference in eradicating breast cancer we must limit disclosure of genetic information and outlaw genetic discrimination in health insurance and the workplace.