Engineering Genetics Policy
Calvo, Cheye, State Legislatures
Michigan lawmakers' cautious, conservative approach to developing genetic privacy protections is sure to be a model for Congress and other states.
As congressional Republicans scurry to respond to the political fallout of the Human Genome Project, the Michigan GOP may have given their Capital Beltway brethren the solution--if only they'd care to notice.
In February, just as President Clinton and congressional Democrats began hammering the GOP for failure to enact genetic privacy protections for all Americans, Michigan Republicans placed the finishing touches on one of the most comprehensive and thoughtfully crafted packages developed by any state. The unanimity of votes aside--the eight-bill package tallied 1,146 to 0--the reform was as Republican as Michigan Governor John Engler himself, who lifted the issue from Senate Democrats as shrewdly as Clinton seized welfare reform and the balanced budget from the GOP.
The Michigan experience signals a new phase of public policy development for what may prove the defining scientific advancement of the 21st century, human genetic technologies. Just months before project scientists completed a working draft of the human genome in June, Michigan rejected the more sweeping laws passed in the 1990s by states such as California and New Jersey, and instead interjected onto the national scene a cautious, conservative alternative for reform.
The states are by no means done. But as federal players on both sides of the aisle look to the states for genetic information privacy models--which they should, given their records--they will see Michigan as the most recent chapter of a rich and storied history.
THE GENETIC CENTURY
Genetic technologies promise to fundamentally transform the human condition through extraordinary advancements in biomedicine. Looking back, historians may view the next 100 years as the Genetic Century.
"It's like standing on the verge of splitting the atom," said Maryland Delegate Dan Morhaim, an emergency room physician. "Genetic technology is the life science equivalent of nuclear power.
Public reaction to genetics remains a mile wide and an inch deep, and has focused more on sensational aspects of the research, such as human cloning. Legislative understanding, however, increased exponentially in the 1990s as a steady stream of legislation on genetic-related topics advanced public policy at the state level.
"The benefits of genetic technologies are potentially unlimited," said Michigan Senator John J. H. Schwarz, a practicing surgeon. "The panoply of benefits will materially alter the way we treat a significant number of diseases. People will come to look at disease differently as the list of genetically based diseases becomes longer."
New advancements already offer tremendous opportunities to diagnose, treat and even prevent otherwise terminal or debilitating conditions. The ability to link genetic mutations to predispositions for certain diseases allows doctors to identify actual conditions earlier and encourages at-risk individuals to prevent or postpone the onset of disease by modifying their environments, lifestyles and personal choices. Deciphering the human genome will lead to drugs tailored for specific genetic predispositions and ultimately gene therapy, the ability to alter patients' genetic codes to fight or prevent disease.
"These technologies may save lives, change lives or offer people reasons to turn their lives around," said Senator Jennie Forehand of Maryland. "This is more important than putting someone on the moon."
Sponsors of genetic information privacy legislation largely approach the issue as advocates of the technology, seeking to relieve public fear regarding potential discrimination against tested individuals and encourage wider participation.
"The benefits of technology are tremendous, but there is a dark side. Concerns about misuse discourage people from taking the tests," said Maryland Delegate Michael J. …