NCSL LegisBriefs, Articles, etc. List

Mapping Public Policy for Genetic Technologies

Executive Summary

Biopolitics is an emerging issue for state legislatures. In 1997, state legislatures considered hundreds of bills related to genetic testing and the National Conference of State Legislatures (NCSL) received more than 1,000 requests for information on a wide range of genetic issues in 1997 and January 1998.

The debate about who should have access to genetic information is growing more intense, affecting medical, employment, education, criminal justice, family and civil rights legislation. Not only are privacy rights a major concern, but laws regulating research and testing facilities are as well. Based on current state activity, it is clear that the controversy surrounding genetic issues will be considered in legislatures and the courts for years to come.

As legislators try to sort through the issues related to this highly complex and technical area, the demand for information is rapidly growing. In response, NCSL has created a legislative task force and a blue ribbon panel. At a recent meeting, the legislative task force identified the following as priorities in state legislatures: privacy, discrimination, licensing and regulation of those engaged in the practice of genetics, human cloning, food labeling and family disclosure, as well as health, life insurance, disability and long-term care issues. The National Conference of State Legislatures has created a legislative task force to review issues related to genetic technologies. In its initial meeting, the task force identified privacy issues and discrimination issues as the two most important areas for legislative review. Beginning in 1998, the task force will begin deliberations on these topics.

The most perplexing facet of developing public policy in the area of genetics is the speed with which this technology is developing. Legislatures addressed the initial emergence of genetic issues in the form of antidiscrimination laws to prevent the use of genetic testing in job applications and in securing health insurance. At least 27 states have enacted laws. However, many states are considering revisions due to the rapidly changing technology and circumstances. States-including Arizona, Arkansas, Maine and Nebraska-held interim committee hearings in 1997. Texas is establishing an interim committee for 1998, and California has established a Senate Select Committee on Genetics and Public Policy.

In addition to the complexities of the subject, genetic technologies include the use of language that is highly technical and that, in some cases, does not have uniform general acceptance as to a specific meaning. All these conditions make drafting effective and meaningful genetic statutes extremely difficult.

As lawmakers throughout the country develop extensive legislation in this rapidly evolving area important considerations are both uniformity of language and language that clearly defines the issues with a general acceptance as to meaning. For example, a uniform definition of genetic information is vital to state and federal statutes as is a comprehensive, clear definition of discrimination.

The emergence of biopolitics in state legislatures, perhaps more than any other subject, signals the arrival of the millennium and the changing political environment. This book is designed to assist legislators and legislative staff as they review and introduce legislation in this area. Each chapter is designed to provide information essential to the debates surrounding biopolitics at both the state and federal levels.

Chapter 1 provides an overview of the issues surrounding genetics-to test or not to test, the role of the courts and several examples of case law as well as the role of legislatures and the controversial issues they are considering.

Chapters 2, 3 and 4 provide definitions of genetics, genomics and cloning and include a discussion of how each is related to the current debate.

Chapter 5 "Challenges in Drafting" discusses the tremendous challenges to policymakers drafting statutory language. As genetic technology offers an increasing understanding of human disease, we can hope to reap valuable clinical and societal benefits. However, this technology and the wealth of information it will yield must be balanced with individual privacy rights. State legislatures have begun to try to protect privacy, confidentiality and autonomy interests in the context of genetics. In drafting and enacting this elgislation in such a rapidly evolving and technically complex area, legislators face many challenges.

Chapter 6 provides an overview of federal activity in 1997. Federal consideration of genetic issues, particularly cloning, is expected to increase dramatically in 1998.

Chapter 7 examines some of the fundamental concerns in the area of insurance, particularly related to discrimination. There also is a discussion of the need to consider life and health issues separately because of fundamental difference in rate-making for each line of insurance.

Chapter 8 reviews the use of genetic testing in employment and potential problems related to discrimination.

Chapter 9 addresses perhaps the most fundamental concern of state legislatures, privacy. Privacy and discrimination were the first products of the genetics debates. The resolution of competing interests in these areas is extremely difficulty and will be debated for years to come.

Chapter 10 provides background about the use of genetic testing in the criminal justice system and addresses concerns about the reliability of such evidence.

Chapter 11, family issues, addresses an emerging area of biopolitics. As genetic testing becomes more widely used in adoption, paternity and reproduction cases, legislatures will want to balance the rights of birth parents, the child and other parties.

Chapter 12 discusses the quiet revolution in agriculture based on genetic technology and provides an overview of the current regulatory framework. While much of the current regulation is at the federal level, there is increasing state activity, such as the reconsideration of state seed laws.

In addition, the appendices contain a glossary of terms, information about the members of NCSL's task force and blue ribbon panel on genetic technologies and other genome projects in the United States.

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