Legislative Breifing Book

“Genomics offers a growing range of technologies to help prevent, detect, diagnose, and treat disease. Appropriate policies are however necessary to ensure that the right tools reach the right people at the right time.” — Organization for Economic, Co-operation and Development (OECD, 2011)

If ever there were an area of medicine that is appropriate for lifelong learning, it is genomics, the study of the functions and interactions of all the genetic material (DNA) belonging to an organism, including interactions with environmental factors to understand the root causes of disease and to better understand how an organism works. Because it is a young and quickly evolving field, it is difficult to precisely determine either the genomic knowledge or the clinical application of that knowledge that will be required for healthcare providers in the future. Indeed, the integration of genomics into evidence-based public health research, policy and practice is one of the major future challenges for our global health-care systems.

Turning that potential into reality, however, will not be easy. Translational genomic research is moving its mission “into the public square” both literally and symbolically. As they approach a wider variety of public and private institutions for DNA samples and clinical information, genomic researchers will find both ordinary people and professionals with non-research interests in their path: patients, community members, clinicians, public health officials, entrepreneurs, and policy makers. Making progress will mean more than simply “taking the public’s pulse” from the vantage point of a genomic soap-box and trying to convert or skirt the crowd. Rather, it will mean negotiating workable relationships with all these stakeholders, and living by those policies which they, working together, have forged.

In light of existing challenges to the U.S. health care system, policy makers will need to capture the potential of genomics to meet public health goals through health policy. The exact role of genomics in the causation of human disease needs to be clarified which means investing in education and research. This understanding will pave the way to innovative new ways of applying the tools of genomics to address health challenges.

As pointed out by a previous Director of the National Institutes of Health (NIH), Harold Varmus:

“[Genomic] science is moving ahead very quickly—[and] definitions, scientific facts, and the scientific community’s approach to certain issues are changing much more rapidly than the governing process can accommodate.”

The rapid pace of technological development in genomics demands that science policy makers respond in a timely manner to ensure optimal use of genomic technologies and to enhance public confidence in the biomedical research community.

Accordingly, policymakers must be aware of opportunities to improve consumer protection, to monitor the implications of genomics for health, social and environmental policy goals, and to assure that genomic advances will be tailored not only to treat medical conditions, but also to prevent disease and improve health.

The advocacy of policy makers knowledgeable about the science of genomics—and its ethical and social ramifications—can advance genomics research and technologies, enhance the transfer and exchange of genomics information, encourage global collaborations, and improve public health services worldwide.

“A society that accepts the reality of human interconnection and effectively structures itself so that egalitarian and humanitarian values are more fully reflected in public policy will be a society that better understands the meaning of public health and responds more appropriately to its challenges. It will be a society that not only talks about community but translates its values into caring—and more effective—public policy.” —American Journal of Public Health, April 2005

To that general end, the legislative briefing book, “Shaping Public Health Policy in the Age of Genomics” has been created.

Greg Fowler, Ph.D. (editor)