EEOC Issues Strong Final Rule Implementing GINA

Moderator's Note: While we do not cover the human genetics side of environmental justice as often as we should, we felt it important to bring this latest positive development to everyone's attention. I have known of and worked with the Council for Responsible Genetics (CRG) for close to two decades now. I can vouch for this source and state unequivocally that this is one of the sharpest NGOs comprised of scientists and social scientists working as public and environmental health advocates. This is an environmental justice issue because the frontiers of human genetics involve the uses (and possible abuses) of bioinformatics and the potential for discrimination remains high. Potential problems may also lay ahead for abuses through the corporate application of mass genotyping and toxicogenomics data bases, issues that are not fully addressed by GINA. This is a good start. Congratulations to our friends and colleagues at the CRG for this important accomplishment.

Rules Set for the Genetic Non-Discrimination Act

PRESS RELEASE FROM THE COUNCIL FOR RESPONSIBLE GENETICS

The Council for Responsible Genetics, a public interest organization, is hailing the Final Rule implementing the Genetic Information Nondiscrimination Act (GINA) released today by the Equal Employment Opportunity Commission (EEOC).  

In its Final Rule, the EEOC lays out in detail strong protections against genetic discrimination and employer access to genetic information for every American worker. 

“Americans can finally take advantage of the tremendous potential of genetic research without the fear that their own genetic information will be used against them,” said CRG President Jeremy Gruber.  “This was a significant victory for the Council for Responsible Genetics, as virtually all our recommendations for reform were incorporated by the EEOC into the Final Rule.”   

The Council for Responsible Genetics played the lead role in advocating for a strong Final Rule implementing GINA.  CRG President Jeremy Gruber met multiple times with the EEOC Commissioners and formally testified before them.  He was the lead drafter of multiple sets of written comments in conjunction with the Genetic and Public Policy Center (referenced as GPPC in the Final Rule Supplementary Information), comments that were adopted by civil rights and patient’s groups, including among others the Leadership Conference on Civil Rights and the Coalition for Genetic Fairness. 

“There is still so much to do to ensure that genetic privacy in this country is respected. Nevertheless, we are one step closer to our goal,” said CRG President Jeremy Gruber.

The Final Rule implementing GINA may be accessed in the Federal Register here.

Since 1983, the Council for Responsible Gene tics has represented the public interest and fostered public debate about the social, ethical and environmental implications of genetic technologies. CRG is a leader in the movement to steer biotechnology toward the advancement of public health, environmental protection, equal justice, and respect for human rights.