Created at the request of the President and with the support of congress in 1962, the NICHD was initially founded to realize a vision: to support the world’s best minds in investigating human development throughout the entire life process, focusing on understanding developmental disabilities, including intellectual and developmental disabilities (IDDs), and illuminating important events that occur during pregnancy.
Since then, the NICHD has achieved an impressive array of scientific advances in its pursuit to enhance lives throughout all stages of human development, from preconception through adulthood, improving the health of children, adults, families, communities, and populations. Research supported and conducted by the NICHD has helped to explain the unique health needs of many, and has brought about novel and effective ways to fulfill them.
The Birth of an Institute
The 1960s began with the inauguration of President Kennedy, and his ushering in of a “New Frontier” in which science and its potential for impacting people’s lives were a major focus. This frontier included not only exploration of space, but also the support of research to understand the inner workings of the human body as a means of improving health.
This was an exciting time for science, specifically biomedical science. The potential for biomedical science to have an impact on lives started off with a breakthrough late in the previous decade. In 1955, Joe Hin Tijo, Ph.D., discovered that human beings had a total of 46 chromosomes. Prior to this finding, human beings were thought to have 48 chromosomes, but the exact number was unknown. Dr. Tijo’s discovery paved the way for research on abnormalities of chromosomes, a significant contribution to what would now be considered genetic studies.
During this time, President Kennedy’s sister, Eunice Kennedy Shriver, began her life-long role as an advocate for people with IDDs. With the help of her husband, Sargent, Mrs. Shriver took on the challenge of improving the lives of people with IDDs and pursued that goal as a senior advisor to her brother.
A research field that focused on IDDs was virtually non-existent at the time. Some leaders in the scientific community felt that money spent to research topics related to IDDs would be better spent supporting research in more productive fields of health. Mrs. Shriver set out to help the scientific community, policy makers, and the general public recognize the importance of such research, not just for those with IDDs, but as a bridge to understanding broader, more general aspects of human development, which would help all people.
Mrs. Shriver advocated for change not only in the views of the scientific community, but also in the way the world viewed people with developmental disabilities, by championing for the acceptance of people with these disabilities in society. Her vision and voice were represented in much of the health-related legislation that passed during the early years of President Kennedy’s administration. The Kennedy family’s personal concerns and commitment to IDDs spurred Robert E. Cooke, M.D., the family’s pediatrician and senior medical advisor to the President, to advocate for research into the health characteristics and needs of people affected by these disorders.
In 1961, Dr. Cooke chaired a task force on the health and well-being of children. The report submitted by the task force to President Kennedy pointed out that research into the physical, intellectual, and emotional growth of children was sorely lacking. The report added that such efforts were seriously curtailed by the absence of a central coordinating point.
The task force members called for the founding of a centralized unit, whose sole purpose was to launch concentrated research into disorders of human development, including IDDs. The plan included three parts: the development of university-affiliated facilities to train personnel to help care for people with IDDs; the construction of 12 IDDs research centers on university campuses to provide facilities and a focus for research; and the establishment of a new Institute within the NIH to conduct and support research on human development and developmental disabilities, including IDDs.
With the impetus from the task force report, congress established a new Institute, the National Institute of Child Health and Human Development within the NIH in 1962. With Presidential support, the NICHD became a funding source for research on birth defects and IDDs, opened the doors to a new field of study on medical school campuses, created a new pediatrics specialty, and established IDDs as a recognized field of research. The formation of the Institute also gave credence to the idea that adult characteristics, such as overall health and behavior, had their origins during the formative years of life; that is, during childhood. With this concept among its founding principle, the NICHD became the first NIH Institute to focus on the entire life process, rather than on a specific disease or illness.
The early years of the Institute were both exciting and challenging. At that time, it was difficult to find researchers, physicians, and educators willing to enter this new field of study. But, with the support of congress, NICHD recruited a cadre of some of the most accomplished researchers in the country. These researchers became directors of the 12 new IDDs research centers, one of the three primary components of the task force plan.
In addition, NICHD staff saw a need for research focusing on the behavioral and social science aspects of human development, including IDDs. They felt that, through the combined efforts of biomedical, biobehavioral, and social science research, science could provide a better understanding of human development, and a greater opportunity for finding prevention and treatment methods. This framework was new to the scientific community as a whole, as well as to the NIH. The founding of the NICHD represented the first time an NIH component would focus on biobehavioral and social science, as well as on biomedical science. But, it was this new focus on combined efforts that helped to build the foundation for the advances in human development research, especially in the developing field of IDDs research.
To learn more about the Institute, visit the Institute mission and accomplishment highlights section of this Web site.