A GENETIC CODE OF PRIVACY
 

Boston Globe Editorial


Genetic privacy guarantees aren't yet among those hot-button legislative issues that fill congressional mailbags and bring people to their feet at political rallies. 

The business of who can conduct a genetic test and how the results can be used to discriminate against people seeking insurance or employment is just coming into America's peripheral vision, still considered more a matter of biology than politics. 

But this perception will change as Congress considers at least eight genetic information protection bills filed for the coming session. The Massachusetts Legislature also has five bills in the works and may join the 24 states that outlaw discrimination based on genetic information. On the federal level only the Kennedy-Kassebaum Health Insurance Portability and Accountability Act of 1996 has at least limited provisions preventing insurance discrimination against employees covered under federally regulated plans. People insured by state-regulated plans and those who buy their own insurance aren't covered. 

The bills in Congress seek to extend protections to this vulnerable group. In addition, the bills would prohibit workplace discrimination based on genetic information for all Americans. No federal statute now provides this protection. 

That's what employees at the Lawrence Berkeley Laboratories in California learned when they lost a 1995 class-action suit protesting privacy and civil rights violations after they were unknowingly tested for the sickle cell gene, along with syphilis and pregnancy, in what they thought was a routine medical exam. The case is being appealed. 

The Council for Responsible Genetics in Cambridge reports discriminatory practices not only against people trying to get work or insurance but against longtime employees who have had benefits cut when an employer claims a genetic test indicates a "preexisting condition." 

The miracles of science have a flip side that can take society into Dr. Frankenstein's laboratory. The public must be alert to the dangers before the miracles create a monster. 


Printed in the Boston Globe, 2 January 1998

© Boston Globe

 
 
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