A Genetics Watchdog
While the emergence of genetic technology holds great hope for the future, Jeremy Gruber ’93 worries about the people who may be cast adrift in the deep end of the gene pool.
As president of the Council for Responsible Genetics (CRG), Gruber recognizes the promise of the burgeoning biotechnology industry. Yet, as an attorney, he is concerned about its impact on public health and safety, privacy and individual rights.
“Biotechnology has a great deal of potential, but, as with any technology, it’s important to ensure that it develops in the public interest and is not misused,” Gruber says. “It is CRG’s role to represent the public in fostering debate about the implications of genetic technology.”
These implications include the capacity of genetic technology to reveal a person’s predisposition to developing some diseases — information that could be unfairly used, for example, to deny a person health coverage or employment.
CRG, which has offices in New York and Cambridge, Mass., was founded in 1983 by a coalition of scientists, public and occupational health activists, and reproductive rights advocates. The organization serves to inform the public about emerging issues in biotechnology and to cast light on worker safety issues in biotech labs. Moreover, the organization collaborates closely with state and federal governments on developing relevant legislation.
Last summer, Gruber and CRG helped win passage of a genetic nondiscrimination law in California that bars bias in areas such as life insurance, mortgages, housing and elections. He is hoping to help enact similar laws in Massachusetts and elsewhere.
Gruber has focused his efforts on human rights issues since graduating from St. John’s University School of Law in 1997. Before joining CRG in 2009, he served as legal director of the National Workrights Institute and field director for the ACLU’s National Task Force on Civil Liberties in the Workplace.
His most notable professional achievement came in 2008, when the Coalition for Genetic Fairness, which he founded, led successful efforts to enact the landmark Genetic Information Nondiscrimination Act. For more than a decade, Gruber labored closely with members of Congress and their staffs on crafting the federal law, which prohibits genetic discrimination in health insurance and employment.
“I still remember sitting in both the Senate and House galleries when they passed the bill,” Gruber recalls. “It was a special day for me when the president (George W. Bush) signed the bill into law.”
Gruber’s commitment to the public interest began when the public he represented was the Brandeis community. As a student, he helped establish BURP (the Brandeis University Recycling Program) and pushed the university to invest its endowment in socially responsible companies.
“Brandeis helped me understand my responsibility in making the world a special place,” Gruber says. “It’s what I’ve been trying to do ever since.”
— David Nathan