Keeping Genes out of the Public Sphere

As the '90s come to a close, scientists have an unthinkable command over the human genome. Years of intense study have made it possible for us to identify the genetic bases for diseases once thought incurable. Already, genetic tests for some 490 diseases are available. Effort applied to research is finally translating into practical benefit for individuals.

The increased use of genetic testing and information, while bringing incredible new therapeutic and diagnostic tools, also raises significant social and ethical concerns. Who will have access to genetic information and in what applications will it be used? Should health insurers use genetic information to issue policies? What about employers? In absence of any salient federal legislation on the issue, some 34 state legislatures nationwide have carefully debated these issues and implemented genetic information laws of varying strength. Still, residents of the remaining states--including Massachusetts--remain unprotected from misuse of genetic information.

The reason Massachusetts has been so slow to address this issue is unclear. Whatever the cause, the legislature must now act decisively to protect the interests of state residents. As it stands, there are some 5.2 million non-elderly state residents who are without any protection from discriminatory use of genetic information in the issue and rating of health insurance. Even though the Health Insurance Portability and Accountability Act of 1996 (HIPAA) prevents the use of genetic information in issue of group health insurance policies, nothing in HIPAA prevents the company from using such information to increase a group's rate and price people out of coverage; furthermore, HIPAA is powerless in the individual and self-insured insurance markets.

In employment, the story is no different. No laws explicitly protect state residents from the use of genetic information in employment decisions.

Why is use of genetic information so questionable and potentially harmful? Philosophical disputes aside, many genetic tests suggest only an individual's heightened predisposition to a certain disorder but do not make a conclusive statement about a person's condition. In the absence of any regulation, this amounts to the undesirable result that state residents may be denied health insurance and employment on the basis of uncertain personal characteristics.

Several proposals for the governance of genetic information are before the Massachusetts legislature at the committee level. State representatives mustn't drag their feet and should make passing effective legislation a priority. Ideally, such legislation will restrict the use of genetic information in health insurance and employment and closely regulate the retention and disclosure of genetic information. Responsibilities for enforcement will be assigned and testing laboratories and physicians alike will be required to clearly explain individuals' rights upon any test or disclosure of results. Such careful regulation will ensure that genetic information is always used in a responsible manner.

Massachusetts, as a state, has the third highest number of residents without any explicit protections of genetic information. Implementation of genetic information regulations will not only remove this blemish but will also protect individuals in a time when genetic information will only become more commonplace.

Sachin H. Jain '02 is a resident of Mather House and author of the Robert Wood Johnson Foundation's State Initiatives in Health Care Reform report, "Understanding the Code: A Comprehensive Survey of State Genetic Information Laws."