The China-US Partnership to Prevent Spina Bifida
The Evolution of a Landmark Epidemiological Study
Author(s): Deborah Kowal
In 1983 two doctors, one from each side of the world, decided to form a partnership, and so began a scientific adventure that would improve the odds that babies could be born healthy and whole. Neural tube defects that severely disabled or killed babies were epidemic in China (where the folk term was guai tai--roughly "monster baby"--for an infant whose embryonic neural tube doesn't completely close and whose head and neck may be misshapen or spine may protrude) and a significant problem in the United States, leading teams of researchers from the United States and China to combine forces to recruit more than 285,000 Chinese women and to follow nearly 250,000 pregnancies in an epidemiological study.
Sixteen thousand staff were involved in running the project, which encountered massive bureaucratic obstacles as well as cultural differences, politicking for study designs and funding, the crisis of Tiananmen Square, and testy debates over research ethics. Nevertheless, the researchers persevered in a collaboration that lasted more than three decades and led to landmark findings on the role of folic acid in preventing spina bifida. Fortifying cereal grain products with folic acid became routine in the United States and a growing number of nations around the world: that intervention was named one of the ten great public health achievements of the last decade.
Biography of Author(s)Deborah Kowal is executive editor and a coauthor of Contraceptive Technology, now in its twentieth edition with more than two million copies in print. As a medical writer specializing in women's reproductive health, she has consulted with the US Centers for Disease Control and Prevention, the World Health Organization, and other organizations. For more than thirty years, she wrote the Public Health section in the World Book Encyclopedia's Science Year Annuals.
"At the March of Dimes we knew how important 'the China study' was to our campaign to increase folic acid consumption by women of childbearing potential. I knew the CDC players well and was continually inspired by their total commitment to preventing neural tube defects. But I did not know the wonderful human touches that are at the core of this thoroughly scholarly yet beautifully engaging narrative. This is science and public health at their very best."
--Richard B. Johnston Jr., MD, Former Medical Director, March of Dimes Foundation
"An inspiring account of a dedicated team that overcame substantial (and sadly needless) obstacles to conducting research of great importance."
--Professor Sir Nicholas Wald, FRCP, FRS, Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry, Queen Mary University of London
"Deborah Kowal's book on the evolution of a landmark epidemiological study brings to life four miracles. 1. The coming together of an American and Chinese vision of childhood without neural tube defects (NTDs). 2. The development of a scientific partnership of two governments moving toward a new relationship of trust, respect, and cooperation. 3. The coming together of a brilliant team of young Chinese and American professionals, each bringing their unique skills to a common task. 4. The creation of new epidemiologic and operational methods relevant to promoting, delivering, and monitoring the delivery of folic acid to over 500,000 pre-pregnant women. The book is must reading for individuals and organizations taking on the challenge of collaborative bilateral research."
--Stanley O. Foster, MD, MPH, Professor Emeritus, Rollins School of Public Health, Emory University