Genetic testing: employability, insurability, and health reform

Presently, 85%-90% of individuals with private health insurance are covered under group health insurance, with most covered through employment. Under virtually any system of health care reform likely to be enacted in the near future, employers will continue to play a major role in the funding of private health care. As costs of health care are increasing dramatically, employers and insurance carriers are examining alternatives for controlling health care expenditures. Not all consumers of health care are equal in their rates of consumption. Tremendous savings could be realized by parties responsible for paying for health care if the most expensive (or potentially most expensive) health care users could be identified and their costs shifted to another payer. Genetic testing could play a major role in predictive health screening to identify individuals with the potential for developing cancer. This prospect raises three major problems regarding employability and insurability. First, individuals could be subject to discrimination in employment, with the responsibility for their health coverage shifted to the public sector. Second, privacy and confidentiality could be compromised through the compilation, storage, and release of non-job-related, sensitive medical information. Third, the fear of employment discrimination through employer access to medical records generated in the clinical setting might discourage at-risk individuals from undergoing medically indicated genetic testing. This report reviews these issues and emphasizes that these concerns must be addressed in the context of health care reform as well as through the interpretation of existing legal proscriptions on employment discrimination.