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Planning Process Overview

In 2002, the National Human Genome Research Institute (NHGRI) was actively engaged in a yearlong planning process to help the institute determine its role in the new era of genomics research that has followed the completion of the Human Genome Project (HGP) in the spring of 2003. The following is an overview of that planning process.

Established in 1989, the NHGRI has led the National Institutes of Health's (NIH) component of the HGP. The NHGRI's Division of Extramural Research (DER) has funded HGP research in laboratories throughout the nation and has coordinated these efforts with those of its partners in the international HGP. The activities of the NHGRI and the HGP have included genetic and physical mapping, DNA sequencing, database development, technology development, and studies of the ethical, legal, and social implications (ELSI) of genome research and genetics.

In February 1993, the NHGRI expanded its role by establishing the Division of Intramural Research (DIR), a cutting-edge program that translates the products of the HGP into knowledge about human genetic disease and its prevention, diagnosis and treatment. The division serves as the hub for human genetics and genomics research on the NIH campus.

Through its Office of the Director, the NHGRI performs important coordination, leadership, planning, policy analysis and communication functions. The office conducts and coordinates policy analysis and development related to human genome research. It also carries out a broad communications program aimed at disseminating information about the HGP and the science and policies of NHGRI and genomics.

Two five-year plans (1994-1998, 1998-2003), which set ambitious goals to achieve the objectives of the HGP and to advance understanding of the human genome and its associated ethical, legal and social implications have guided the institute since its inception. These plans have been instrumental to the success of the HGP, by clearly enumerating the program objectives of the U.S. component of the HGP to the scientific community and the public and by providing measurable objectives to guide the work and gauge the progress of the HGP.

The 1998-2003 plan, published in Science in 1998, emphasized the sequencing of the human genome. The plan accelerated the previously scheduled completion of the human genome sequence by two years, to the end of 2003. It also maintained enhanced training of scientists and clinicians in genomics, technology development for DNA sequencing, and research in bioinformatics, computational biology and ELSI as NHGRI objectives, while adding goals for technology development in functional genomics, and research in human sequence variation and comparative genomics.

The 1998-2003 goals set out for the ELSI research program included examination of issues surrounding the completion of the human genome sequence and the study of human genetic variation; the integration of genetic technologies and information into health care and public health activities; the integration of knowledge about genomics and gene-environment interactions into nonclinical settings; the ways in which new genetic knowledge may interact with a variety of philosophical, theological, and ethical perspectives; and how socioeconomic factors and concepts of race and ethnicity influence the use, understanding, and interpretation of genetic information, the utilization of genetic services, and the development of policy.

When the 2002 planning process was initiated, almost all of the goals of the 1998-2003 plan were either accomplished or on a clear path towards completion. Thus, the time had again come to examine the current state of the institute and the field of genomics and to think creatively about the exciting possibilities that lie ahead for genomics and its applications to human health. This was an opportunity to think boldly and broadly about where genomics is heading and how the NHGRI could best facilitate its continuing prosperity. Unlike previous five-year plans, this planning effort explored all components of the institute: the extramural research program, the intramural research program, and the activities of the Office of the Director.

To launch this process, the institute invited a group of experts in genomics, its applications in biology and medicine, and its ethical, legal and policy implications to a kick-off meeting at the Airlie Conference Center in Warrenton, Va. in December 2001. The purpose of the meeting was to identify the predominant themes that would emerge in genomics research over the next ten to 20 years, without regard to which of these might be appropriate for the NHGRI to pursue. A number of specific areas of genomic research were identified for further exploration. Over the course of 2002, a series of workshops further explored the ambitious, high-risk, and high-payoff ideas that resulted from this conference.

The workshops, held on the dates indicated below, addressed the following questions:

1. Within the broad landscape of the workshop area, what are the important priorities and unmet needs?;
2. What important priorities, challenges and opportunities should NHGRI tackle and why? Which should it not tackle, and why not?; and
3. What specific activities should NHGRI undertake to accomplish these priorities/goals?

Planning Process Workshop Timeline

In November 2002, NHGRI convened a second Airlie conference to summarize and synthesize the findings and recommendations that came out of these workshops. Following this, the institute wrote a new plan outlining its vision for the future of genomics research. The NHGRI published this plan in April 2003, a month that also witnessed the 50th anniversary of the publication of the structure of DNA, the seminal work of James Watson and Francis Crick, and the completion of a finished sequence of the human genome.

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Last Reviewed: May 13, 2008