Genetic information is defined as data about genes, gene products, or inherited characteristics. This information can come from several sources including genetic testing, testing for the presence of a protein in blood or tumor tissue, or from physical examination noting features suggestive of an inherited condition, such as, the presence of freckling and polyps associated with Peutz-Jegher syndrome. Conventional medical records (blood pressure, medical history, etc.) differ from genetic medical information in several important ways. Safeguards to protect the special nature of these documents are starting to be addressed by the insurance industry, lawmakers, and medical institutions.

Recent changes in the health care industry have made the information contained in our medical records more readily available to third parties, such as insurance companies and employers. This trend has been influenced mainly by managed health care systems, which often have very complex referral and authorization practices. Access to our medical information has also been facilitated by the use of electronic medical records systems. It is important for the consumer of medical care to be aware of this. The process of applying for health insurance or simply filing an insurance claim for reimbursement for a routine medical appointment often involves signing a release. This release may allow your personal medical information to be sent to any number of third parties, including your own insurance company, your employer and possibly the Medical Information Bureau (MIB), a database that is available to more than 600 health, life and disability insurance companies.

There are some steps you can consider to try to minimize the amount of medical information that is released. Discuss your concerns about confidentiality with your doctor and ask your doctor to send only the information necessary to justify a particular referral or procedure, not your entire record. Carefully read any statement you are asked to sign for release of your medical information and consider changing the wording to limit the amount of information that may be sent, such as specifying the date of the clinic visit from which information can be sent. You may want to find out whether any of your medical information is on file with the MIB and, if so, whether the information is accurate. To receive information about how to request a copy of your file, write the Medical Information Bureau, P.O. Box 105, Essex Station, Boston, MA 02112, or call 617-426-3660.