Genetics & Public Policy Center
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Overview

The GPPC Vision
The tremendous success of the Human Genome Project has laid the foundation for a true revolution in public health, promising improved diagnosis, more effective medicines, and individually tailored health care. The Genetics and Public Policy Center was created in 2002 at Johns Hopkins University by Pew Charitable Trusts to help policymakers, the press, and the public understand and respond to the challenges and opportunities of genetic medicine and its potential to transform global public health.

The GPPC Approach
The Center's track record of policy change and public awareness, remarkable for such a young organization, is built firmly on the unique skills that it brings to bear on the intersection of genetics and policy. Alone among the many organizations that focus on genetics issues, the Center conducts rigorous legal research and policy analysis, performs policy-relevant social science research, crafts robust policy options and recommendations, convenes and consults key stakeholders to identify common ground and develop consensus, and influences national genetics programs and policy.

For a major study initiative on the quality of genetic tests, for example, the Center surveyed genetic testing laboratory directors to identify concerns about the safety of tests available to the public. Our legal research identified the need for fundamental changes in how the government regulates genetic testing laboratories, changes without which public confidence in genetic testing will certainly decline and threaten the very future of personalized medicine.

The Center proposed a policy solution to bolster genetic testing oversight, convened a national summit on genetic testing quality to develop consensus for the proposed regulatory rule, testified before Congress and federal agencies about gaps in genetic testing regulation, filed a petition for rulemaking about genetic testing, and worked with policymakers to close a key regulatory gap. No other organization can deploy such a full-spectrum skill set capable of addressing the policy and public health implications of genetic research

Our Genetic Future
Thanks to substantial and ongoing private and public investment, the United States has a robust genetics and genomics research enterprise that produces an abundance of riches. However, today we have neither the policies nor programs in place to translate these discoveries efficiently and effectively into lifesaving tests and treatments. Just as the microscope and Bunsen burner are insufficient tools for modern genomics research, today's antiquated programs and policies governing the translation of research into public health benefits are not up to the task of bringing about the genomics age.

In order to realize the potential of genetic medicine, the Center has a detailed plan to:

  • Develop and advocate for policies ensuring the safety and effectiveness of genetic tests and treatments;
  • Create models for fair systems of reimbursement to ensure broad access to genetic medicine and incentives for innovation;
  • Shift the current, sluggish paradigm for creating, disseminating, and adopting medical and industry guidelines to a high-throughput, responsive, and evidence based system that benefits the public;
  • Protect genetic information so that the public feels safe taking a genetic test and participating in genetic research;
  • Build public understanding of, and trust in, genetic medicine.

Only with these five key elements in place can we be assured that our investment in genomics has truly paid off in public health benefits.

"Our laws and institutions must keep pace with the progress of the human mind."

Thomas Jefferson