The Jackson Laboratory (JAX) in Bar Harbor, Maine, a highly regarded institution for genetics research and education, recently signed an agreement with the National Coalition of Health Professional Education in Genetics (NCHPEG) to acquire and maintain the coalition's website, content and other assets. NCHPEG's website hosts a wealth of targeted instructional programs for various disciplines including genetics and dentistry, genetics and psychiatric disorders, and genetics and common diseases.
"JAX will maintain NCHPEG's educational programs and websites so that they can continue to be freely available to the healthcare community, while also developing new programs," said W. Andrew Faucett, M.S., C.G.C., president of the NCHPEG Board of Directors. After a period of transition, the NCHPEG logos on existing programs and materials will sunset, he noted.
The American Society of Human Genetics has maintained the NCHPEG website after the nonprofit organization, based in Lutherville, Md., was forced to close on August 31, 2013, due to funding problems.
JAX hired three of NCHPEG's staff members - Kate Reed, Emily Edelman and Therese Nissen - to continue NCHPEG's vital work. It will add the NCHPEG website to its already robust education program, which provides pre-college and college education programs, pre-doctoral and post-doctoral training programs, and a growing roster of web-based educational material, courses, conferences and workshops for working scientists, lab professionals, physicians and the public.
The National Coalition for Health Professional Education in Genetics (NCHPEG), an organization that has promoted health professional education in human genetics and genomics for two decades, will cease operations on August 31, 2013, according to NCHPEG Executive Director Joan Scott, M.S., C.G.C. Fortunately, the wealth of information collected on its website will be maintained by the American Society of Human Genetics (ASHG), confirmed Joseph McInerney, M.S., executive vice president of ASHG and former executive director of NCHPEG.
"NCHPEG has made outstanding contributions to the genomic education of healthcare professionals," said Eric D. Green, M.D., Ph.D., director of the National Human Genome Research Institute (NHGRI). "I applaud NCHPEG's important educational efforts and their many important contributions to the educational enterprise."
In 1996 when NCHPEG was first founded, the only healthcare applications of genomics were within the reproductive context, pediatrics and, later on, in oncology. There were very few applications for primary care providers.
"A lot has changed since then," Ms. Scott said. "There are many more clinical applications of genomics available and a growing awareness within the healthcare provider community that they need to be thinking about incorporating them into practice. We see more institutions and organizations developing initiatives to bring genomics into the clinic."
"We hope the community recognizes the need for education," Mr. McInerney said, as ASGH considers how to fill the educational gap left by NCHPEG's closure. "But we have to be thoughtful. NCHPEG is closing as a direct result of the current funding climate. We have to determine where our funding for education programs would come from if our board decides to take this on."
As the Human Genome Project progressed in the 1990s, Francis S. Collins, M.D., Ph.D., then-director of the National Human Genome Research Institute at the National Institutes of Health (NIH), and Kathy Hudson, Ph.D., then-director of the NHGRI Office of Policy and Public Affairs, began to think about educating health care providers on incorporating genetics into their practices. Drs. Collins and Hudson are, respectively, current NIH director and NIH deputy director for science, outreach and policy.
Dr. Collins reached out to the American Medical Association and the American Nurses Association, organizations that had also recognized the need to train health care providers in genomics. Their conversations resulted in the development of NCHPEG.
In the first few years, the organization functioned with donated work by volunteers but no actual funding. Over time, its membership grew to include genetics professionals, primary and specialty care providers at all levels, industry leaders, major health plans, consumer and patient advocates, and government and regulatory agencies.
In 2000, Dr. Collins and Alan Guttmacher, M.D., then senior clinical advisor to the NHGRI director, applied for and received a Robert Wood Johnson Foundation grant. Dr. Guttmacher is the current director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). They then hired Joseph McInerney, M.S., as NCHPEG's first full-time executive director in 2000.
"My task was to make the organization grow, which required concrete visible programs," said Mr. McInerney. One of its first efforts was led by Jean Jenkins, Ph.D., staff with the NHGRI Genomic Healthcare Branch. She headed development of NCHPEG's first publication in 2001, Core Competencies in Genetics for All Health Professionals. In 2007, NCHPG updated this landmark document.
"We distributed thousands of them," Mr. McInerney said. "Our premise was that healthcare professionals want to be up-to-date on all areas of medicine. Many of them already felt like the field of genetics and genomics was snowballing and they wanted to be ready."
NCHPEG also started developing targeted instructional programs for various disciplines: genetics and dentistry, genetics and psychiatric disorders, and genetics and common diseases. They encouraged member organizations to submit proposals for developing educational programs for their own specialties. NCHPEG developed more than two dozen programs in the last decade in collaboration with specific audiences.
NCHPEG maintained quality control of the educational programs through the use of a rigorous and iterative curriculum development process imported from the Biological Sciences Curriculum Study, in Colorado Springs, Colo., where Mr. McInerney worked for 22 years before joining NCHPEG.
"These programs, which include field testing, were expensive to produce. NCHPEG website content reflects no less than a $10 million investment. This is important to save," he said.
In his new role at ASHG - Mr. McInerney started as ASHG vice president in March - he found ASHG's leadership supportive of maintaining the NCHPEG website. Over the next six months, the ASHG board will consider whether to become more deeply involved in healthcare provider education in genomics.
Whatever the outcome, NCHPEG has been a worthwhile endeavor, Ms. Scott said. "We owe a great deal to the dedicated time and efforts made by our collaborators, our members and our staff. We salute the community writ large."
Last Updated: October 28, 2013