The New Enemy of Privacy: Big Bucks

Challenge, May, 2000 by Amital Etzioni

While information about people's genetic predispositions is collected much less often than other medical information, its collection is on the rise. A 1996 study conducted by Harvard and Stanford universities documented 206 cases of genetic discrimination against asymptomatic individuals. The individuals involved suffered loss of employment, loss of insurance coverage, or ineligibility for insurance based on the genetic potential for disease-not on any current maladies or symptoms. In another survey, conducted jointly by several federal agencies, 550 people were found to have been denied jobs or health insurance because of genetic predisposition to certain illnesses. Nearly a third (31 percent) of members of families with inherited diseases were found to have been denied insurance coverage even though they displayed no symptoms, in a survey cited in congressional testimony by the director of the Human Genome Project, Dr. Francis Collins. It is safe to assume that there are numerous other cases, unrecorded, o f people unaware of the reasons they were not hired, were fired, and so on.

Fear of improper use of medical records is harming medical research and may endanger treatment. On this topic, Senator Olympia J. Snowe reports:

One-third of high-risk women refused to participate in a Pennsylvania study to understand how to keep women healthy with a breast cancer gene. They refused to participate because they feared losing confidentiality with respect to genetic information. [At] the National Institutes of Health...32 percent of women eligible to undergo genetic testing for a breast cancer gene refused to do so, again for fear of losing privacy and confidentiality with respect to genetic testing and genetic information. (Statement before Hearing of the Senate Labor and Human Resources Committee on Genetic Information Technology, May 21,1998)

Regarding treatment, A.G. Breitenstein, director of the Health Law Institute, an advocacy group based in Boston, said, "People are not going to feel comfortable going to the doctor, because now you are going to have a permanent record that will follow you around for the rest of your life that says you had syphilis, or depression, or an abortion, or whatever else" (Sheryl Gay Stolberg, "Health Identifier for All Americans Runs Into Hurdles," New York Times, July 20, 1998, All).

In addition to abetting authorized abuse by employers, privacy merchants find that private medical information is a lucrative commodity. According to Kathleen A. Frawley, vice president of the American Health Information Management Association, "There is a whole market of people buying and selling medical information." One such marketing firm is IMS America of Totowa, New Jersey, which buys patient records--with personal identifying information attached--outright from state governments, medical clinics, and drugstore chains.

The Medical Information Bureau (MIB) is a clearinghouse of personal medical information. Its members include 680 life insurance companies and most major issuers of health and disability insurance in the United States and Canada. Member companies are required to submit any information about the individuals they insure or who have applied for insurance that pertains to their life expectancy. This includes medical information, encompassing conditions such as high blood pressure and obesity, and other information that may affect insurability, such as a reckless driving record or participation in hazardous activities. Whenever an individual applies for health, life, or disability insurance, the company obtains the record MIB has compiled on him or her.