Genetic secrets: social issues of medical screening in a genetic age.

In the 1990s, as the multi-billion-dollar Human Genome Project makes more and more genetic information available, we would do well to look closely at the social context of power dynamics, control, and economic interests within which that information will be used. Let us consider four specific questions. How does social stratification by race, ethnicity, gender, and social class affect the use of genetic information in the workplace? In what ways are perspectives on genetic testing socially located? What can fetal exclusion policies teach us about how genetic information might be used to identify high-risk individuals? What social and political challenges are posed by new information about genetic abnormalities, and how might that information be distributed fairly? The Genetic Scarlet Letter Genetic information can be used to screen workers who might be pre-disposed to disease. In pre-employment genetic testing, job applicants who have genetic traits such as G-6-PD deficiency or sickle cell trait can be screened out of jobs for two main reasons: to prevent on-the-job health damage to especially vulnerable individuals, and to protect employers from the medical costs and possible lawsuits that stem from worker disease. Employers have a strong interest in requiring employees to report any genetic traits that may make them more vulnerable to work hazards, in part because such information may absolve management of responsibility for contributing to workers' disease. Even when employers are reluctant to use genetic information to exclude workers, insurers may pressure companies to collect genetic information and to differentiate between high-risk and low-risk individuals. Within an employment context, management typically has access to much of the information from medical tests that employees undergo. When physicians are employed by private corporations, their legal responsibility to keep test results confidential has been quite limited: in the workplace, genetic information is unlikely to be kept secret. As genetic information accumulates, spurred on by the Human Genome Project's resources, many more people will find themselves stigmatized as a bad risk for, employment, sometimes with grave economic consequences for themselves and their families. They may find it virtually impossible to obtain health insurance. They may also be stigmatized within their families and friendship circles. Thus employment and the broader social context of medical testing will have a strong effect on how people perceive the possible benefits and dangers of genetic information. Employers and insurance companies treat individuals they identify as high risk in ways that depend not simply on biology, but on race, ethnicity, and gender. For example, G-6-PD deficiency and sickle cell trait are found in higher proportions among blacks, so that screening out people with those traits will mean screening out a disproportionate number of blacks. They claim to be screening out only individuals who may be genetically susceptible to damage from working conditions. But in using genetic information they are more likely to exclude people from relatively high-paying jobs, and the individuals screened out are most likely to be blacks or women, who have entered those jobs in large numbers only in recent years.[1] Thus in airline, chemical, and steel companies, blacks or women have been identified as genetically at high risk in relatively high-paying production jobs, which they have entered only recently. But in those same companies and in many others, genetic information has seldom been used to screen people out of low-paying, hazardous jobs. Lessons from Johnson Controls The Johnson Controls case that the Supreme Court decided in 1991 is instructive for understanding how genetic information is used to identify high-risk groups. The Johnson Controls Company, which manufactures batteries, had a policy of excluding fertile women from relatively high-paying jobs that involve exposure to lead, in the belief that exposing women to lead might damage fetuses. …