Recently, along with the other two reference librarians at the Bioethics Research Library at Georgetown(BRL), I attended a meeting of participants in the National Human Genome Research Institute’s (NHGRI) CEER program. We presented on the BRL’s services, as related to ethics and bioethics issues in genetic and genomic research.
|Source: Cover - Nature, Feb. 10, 2011|
To many, CEER and ELSI may sound like an enigma wrapped in a mystery. Government organizations, and librarians are well-known for creating such acronyms. The mystery part -- ELSI -- is Ethical, Legal and Social Issues associated with biomedical and human experimentation research.
CEER -- the enigma -- stands for Centers of Excellence in ELSI Research, an NHGRI program to bring researchers in genome and genetic research together with researchers in the clinical and social sciences, law, bioethics and the humanities.
The initial focus of a research project is on the design stage, when it must come before an institutional review board and receive approval. Since the fields of genome and genetic research are growing so fast, genomic information is proliferating, and new technologies are emerging, for which not all the bioethics consequences can be foreseen. Therein lies the mystery. And the CEER program is the enigma, that encourages establishment of new mechanisms to deal with these unforeseen consequences.
NHGRI's strategic plan for the future of human genome research, called Charting a course for genomic medicine from base pairs to bedside was published on February 10, 2011.
The broad research priorities are as follows:
- Genomic Research. Particularly, the production, analysis and broad sharing of individual genomic information that is frequently coupled with detailed health information.
- Genomic Health Care. How rapid advances in genomic technologies and the availability of increasing amounts of genomic information influence provision of health care and the health of individuals, families and communities.
- Broader Societal Issues. The concepts of health, disease, and individual responsibility and how new genomic information and technologies are changing these concepts and standards.
- Legal, Regulatory and Public Policy Issues. The effects of existing genomic research, health and public policies and regulations and the development of new policies and regulatory approaches.
There are 6 CEER centers, as follows:
- University of Washington Center for Genomics and Health Care Equality
- Stanford University School of Medicine Center for Integration of Research on Genetics and Ethics
- The Duke Center for the Study of Public Genomics
- Case Western Reserve University Center for Genetic Research Ethics and Law
- Center for Genomics and Society at University of North Carolina-Chapel Hill
- University of Pennsylvania Center for the Integration of Genetic Healthcare Technology (Penn CIGHT)
Green, Eric D.; Guyer, Mark S.; National Human Genome Research Institute. Charting a course for genomic medicine from base pairs to bedside. Nature, 2011 February 10, 470:204-213 doi:10.1038/nature09764 [Accessed: October 27, 2011]