by 
By Rep. Louise Slaughter (D-N.Y.)*
When scientists started the process of sequencing the human genome, it began to unlock limitless advancements in medicine that were and remain virtually unparalleled in our history. At the same time, a new risk arose that genetic information could be used for employment and health insurance discrimination. Every American was a potential victim; none of us were born with perfect genes.
No one should be forced to live in fear that their genetic information could be used to deny them a job, educational opportunity, or health insurance. Despite the fact that everyone has a bad gene, I’ve seen too many people discriminated against. That’s why I wrote the first genetic nondiscrimination bill in 1995. My hope was to move the legislation forward to outlaw discrimination and remove a major barrier to making progress in genetic research. Unfortunately, many of my colleagues, persuaded by self-serving arguments from the insurance industry, put up a fight and failed to give this bill the attention it deserved.
In politics and life, you’re only defeated when you give up. It took longer than I would have liked, but we finally had success after I introduced the bill for a full seven Congresses. After this fourteen-year fight, my bill, the Genetic Information Nondiscrimination Act (GINA), finally passed the House by a vote of 414-1 and the Senate unanimously in 2008, before being signed into law by President George W. Bush.
The late Senator Ted Kennedy, D-Mass., called this bill “the first civil rights act of the twenty-first century,” and Dr. Frances Collins, who is now the Director of the National Institutes of Health, said that watching it pass in Congress was a seminal moment in his career.
By prohibiting the improper and discriminatory use of genetic information, people could take advantage of the life-altering potential of genetic research without fearing that their employers could fire them and their health insurers could raise their rates based on a test result. This law has since gone on to play a leading role in much of the groundbreaking medical research being done today.
Congress reiterated its support for the fundamental importance of this law when it passed the 21st Century Cures Act late last year, which was signed into law by President Obama. The bipartisan legislation contains some of the most significant advances in research privacy protections in decades, giving those taking part in genetic testing even more safeguards to keep their data private.
Despite the long-standing, bipartisan backing for GINA and the recent widespread support for the 21st Century Cures Act, congressional Republicans are now working quickly and quietly to roll back these safeguards by passing H.R. 1313. The so-called Preserving Employee Wellness Programs Act would make it easier for employers to access their employees’ medical information and genetic testing. Worse still, this proposal would give employers access to the same information about their employees’ spouses and even their children. Any employees who decline to provide this information would face penalties that could cost them thousands of dollars a year.
These financial penalties are a way for employers to force their employees to provide sensitive medical information and would make a private health condition anything but. This Republican bill would take our nation back to the days before GINA, where employees could once again have their genetic information used against them, with their jobs and health care back on the line.
We cannot afford to turn back the clock with the Preserving Employee Wellness Programs Act and reverse the progress we’ve made under GINA. Private genetic information should remain exactly that, and not follow an employee into the workplace. If Republicans succeed in passing this bill, it would open an enormous loophole in Americans’ hard-won privacy protections and threaten the remarkable medical research progress we’ve made in recent years.
I’m gratified by the many agencies, groups, and advocates that have already weighed in against this legislation. The public must join the scientific and consumer protection community to demand that Congress protect our privacy and promising medical breakthroughs by scrapping this dangerous bill.
*Rep. Slaughter has served as the U.S. representative for New York’s 25th District since 1987 and is the current ranking member of the House Rules Committee. Her work on GINA previously was published in the Harvard Journal on Legislation.
Photo Credit: Andrea Laurel