The Dispersion of Genetic Technologies and the Law

Abstract

Genetic technologies offer two powerful and distinct types of information that have different implications. First, genetic tests can reveal information about an individual's predisposition to illness later in life. Numerous questions are raised by this sort of information: At what point in a test's development can individuals have access to it? What do people need to know before they decide whether to use a predictive test? Once predictive information is known, must the individual make efforts to ameliorate the risk? Can employers or insurers refuse to deal with a person who is likely to be expensive? The answers to these questions are made difficult because requiring individuals to act in ways that maximize physical health or allowing third parties to act on this information treads on liberty and privacy interests. But as complex as these questions are, they are nonetheless similar to issues that legislatures have confronted before. Second, genetic tests can reveal an individual's increased chance of having a child with certain, often undesired traits. Even suggesting that individuals act on this information requires that issues about promoting and avoiding childbearing be addressed. As with predictive testing, questions about childbearing also turn on liberty and privacy interests. The various aspects of controlling procreation are, however, harder to address because the scope of the freedom to make procreative decisions is more contested in our society than questions about how one deals with one's own health. Legislatures, administrative agencies, and courts have begun to grapple with some of these questions. To complicate matters further, private litigants often pursue claims that conflict with the goals of the public law sector. But while the law's response to genetic testing is incomplete and at times inconsistent, certain priorities emerge. Access to Services In the area of genetic testing, the federal government rarely provides services. It has also taken a less prominent, although still substantial, role in providing funds to states in recent years.[1] The states, the primary bearers of responsibility in matters of health, vary greatly in their approach to genetic services. Interestingly, legislators have generally ignored the reproductive implications of the service providing genetic information most commonly offered by the state-newborn screening. Finding an affected child during newborn screening often means that the parents have a substantial risk of having another affected child in later pregnancies. This risk can create a legal obligation to inform the parents of the implications for future childbearing. Many state agencies have struggled to develop strategies to reach these parents, particularly since the widespread adoption of hemoglobinopathy screening, which detects large numbers of children who are sickle-cell carriers. These state actors may view the need to convey genetic information as something they would rather avoid. Some officials, however, view the chance to avert the birth of affected children as an advantage of newborn screening. States have devoted more attention to the implications of genetic testing done explicitly in relation to procreation. Several state legislatures passed statutes creating statewide genetics programs that specifically include testing done primarily to enable individuals to make informed reproductive decisions. Enacted in the mid- to late 1970s, many of the statutes are quite elaborate, containing for example detailed provisions requiring that services be voluntary and that results be kept confidential. Others are quite simple, saying nothing at all about protecting the interests of the potential consultees. Indeed, some legislatures seem to have added statewide genetic services as an afterthought to newborn screening laws.[2] Analysis of the statutes and regulations that address reproductive genetic services suggests that there is little consensus about the appropriate uses of these technologies. …