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January 2003
Dear members,
The mission of the March of Dimes Birth Defects Foundation is to improve the health of babies by preventing birth defects and infant mortality. March of Dimes Global Programs builds on the Foundation's strengths through development and implementation of innovative programs to promote perinatal health worldwide.
This electronic newsletter provides you with announcements about March of Dimes resources and activities, promising new research results, upcoming conferences and other useful topics.
Maternal and Child Health Genetics in China in the 21st Century Beijing, People’s Republic of China
October 27-30 2002
The revolution in medical genetics and technology during the past two decades has profoundly benefited the health of many individuals and families in the industrialized world. Examples include prenatal and newborn screening and the renewed attention to ethical, legal and social issues in health that these technologies bring. Unfortunately, these benefits have had little impact in low- and middle-income countries where more than 80 percent of the world’s population—4.8 billion people—lives. In these countries, congenital abnormalities and other conditions arising during the perinatal period cause more healthy years of life to be lost to premature mortality and disability than almost any other condition.
In response, there is a growing recognition in developing countries about the need to systematically transform the potential benefits of the genetics revolution into professional knowledge, national will, and consumer demand for genetic services and information. A number of national action plans addressing this need have been issued (e.g., in South Africa, China). On the global level, the World Health Organization (WHO) in 1999 issued the report, Services for the Prevention and Management of Genetic Disorders and Birth Defects in Developing Countries, which argues for incorporating basic public health genetics in all health systems.
March of Dimes Global Programs strongly supports national efforts to improve genetics education and service delivery and its activities in this area are based on three interlocking strategies: (1) professional training to deliver basic knowledge of genetics to primary care providers; (2) engaging governmental and other agencies to achieve a sustained and visible national commitment for planning and providing genetics services; and (3) developing parent groups to create informed consumer demand for genetic services and information.
An example of recent activity is the conference, Maternal and Child Health Genetics in China in the 21st Century, co-hosted by the March of Dimes and the China Preventive Medicine Association (CPMA) in Beijing on 27-30 October 2002. The conference convened health officials and experts in genetics from the Shandong, Zhejiang and Hunan provinces, the major metropolitan areas of Beijing, Guangzhou, Shanghai and Shenyang, and the national government. Its purpose was to review population-based genetics needs assessments conducted in advance by each of the seven participating regions with the help of the March of Dimes and recommend how each could be strengthened. The Ministry of Health requested that the updated needs assessments be submitted to it by 1 December 2002. The assessments will provide the basis for subsequent action plans for newborn screening, genetic services and education programs to prevent and treat genetic diseases.
Conference speakers included representatives from: the March of Dimes; CDC; Health Resources and Services Administration (HRSA); University of Washington School of Public Health; Columbia University College of Physicians and Surgeons; California Department of Health Services; Witwatersrand University, South Africa; China Preventive Medicine Association and China Ministry of Health. Over 200 participants attended the Beijing conference. Additional funding for the conference was provided by CDC, HRSA, Astoria-Pacific International and Golden Bridge International, Inc.
Global Programs initiated the conference with CPMA to assist in bringing China into the global genetics health community by providing policy-makers and researchers with information on how effectively and ethically to incorporate public health genetics into primary care. The conference provided an arena to inform a coordinated, cost-effective and ethical application of medical genetics that will improve the lives of millions of children and families in China. For further information on the conference, please click here.
Reduction in Prevalence Rates of Spina Bifida and Anencephaly During the Transition to Mandatory Folic Acid Fortification in the United States—1996-1998
Globally, an estimated 500,000 children are born each year with neural tube defects (NTDs), the most common being spina bifida and anencephaly. Strong evidence links increased consumption of folic acid with decreased risk of NTDs. This led the U.S. Public Health Service in 1992 to recommend that all women of child-bearing age consume 0.4 mg (400 mcg) of folic acid daily. Achieving this recommended level through consumption of naturally-occurring folates in foods, however, is difficult, because the bioavailability of folates in foods is low. Providing folic acid supplementation to the entire at-risk population is equally difficult, if not impossible, because of the cost and major logistical challenges involved. For these reasons, fortification of foods for mass consumption has been considered a key public health strategy for providing the general population with the recommended daily amount of folic acid. In response, the U.S. Food and Drug Administration (FDA) in March 1996 authorized the addition of synthetic folic acid to enriched grain products at the level of 140 mcg per 100 g of grain, with mandatory compliance to be achieved by January 1998. The average daily intake of folic acid in the U.S. population in the pre- to mandatory fortification period has been estimated to be 100-200 mcg of folic acid daily. The question that needed to be answered was what effect did folic acid fortification at this level have on NTD rates in the U.S. population?
Data from 24 population-based surveillance programs summarized and published in the journal Teratology (Williams et al. Teratology 66:33, 2002) suggest an important effect. The prevalence of spina bifida decreased 31% following fortification and the authors argue that the decline was temporally associated with folic acid fortification.
Whether the decline in NTD rates would have been greater had the level of fortification been higher is a question that remains unanswered. Wald et al. (Lancet 351:834, 1998) has estimated that consumption of 100, 200 and 400 mcg of folic acid daily is associated with an 18%, 35% and 53% decline, respectively, in the prevalence of NTDs. Some argue that while fortification at the FDA level may have prevented approximately 800 of the 2,000-3,000 annual cases of spina bifida and anencephaly that would have been expected had there been no fortification, if 95% of all women consumed the recommended daily dose of 400 mcg of folic acid, the reduction in prevalence would have been much greater.
To examine this question, the March of Dimes has collaborated with the Instituto de Nutrición y Tecnología de los Alimentos (INTA) of the University of Chile and the CDC to assess the effects the introduction of folic acid fortification in Chile in January 2000 at the level of 220 mg per 100 g of flour had on NTD rates. This amount is estimated to have resulted in a daily mean intake in the population of approximately 400 mcg of folic acid. The effects of fortification at this higher level on serum and red blood cell folate concentrations in women of childbearing age and on NTD rates are currently being evaluated.
Advocating for Folic Acid: A Guide for Health Professionals
The Association of Schools of Public Health (ASPH) announces “Advocating for Folic Acid: A Guide for Health Professionals.” The free, Web-based, interactive course is designed for health professionals and students, offering information on the benefits of folic acid and strategies for counseling individuals on optimal folic acid intake. The module includes a section directed to specific health professionals, including those in allied health, dentistry, dietetics, medicine, nursing, optometry, pharmacy and public health. The course may be accessed through http://www.folicacid.net
World Alliance of Organizations for the Prevention of Birth Defects Report
The World Alliance of Organizations for the Prevention of Birth Defects (WAOPBD) is dedicated to the prevention and amelioration of birth defects by the application of existing knowledge, promotion of research leading to new knowledge, and professional education directed primarily to health care providers. WAOPBD is the originator of a recent report released by the World Health Organization, Services for the Prevention and Management of Genetic Disorders and Birth Defects in Developing Countries (1999). The report, based on findings of a joint WHO-WAOPBD meeting of experts, assesses the status of genetics services in developing countries and provides recommendations on the development of programs at the primary care level for management and prevention of genetic disorders and birth defects. National action plans to incorporate public health genetics into primary health care systems have been drafted by South Africa and China following the recommendations of the joint report.
The Alliance, which has been partially supported by March of Dimes, accepts membership from many different types of non-governmental organizations. A future focus of the World Alliance will be on encouraging community-level awareness and action through development of international birth defects patient/parent groups. The Web site for the Alliance is http://waopbd.org
Studying the Effect of Fish Oil Supplementation on Birth Outcome
A Chinese and Danish research team is exploring the idea that a woman can lower her risk of having a premature baby by taking a small daily dose of fish oil during the second half of pregnancy.
Funded by the March of Dimes, the study is headed by Dr. Sjurdur F. Olsen of the Danish Epidemiology Center, Statens Serum Institut in Copenhagen, and Drs. Weijin Zhou and Yan Che of the Shanghai Institute of Planned Parenthood Research, a World Health Organization collaborating center for research in human reproduction.
The study includes more than 10,000 women in central China, where fish consumption is low. This fact allows a randomized, controlled study of fish oil supplementation with minimal confounding by fish in the diet. An equal number of women in each of three groups receives daily oil capsules containing 2.8, 0.7 or 0 grams of n-3 fatty acids.
Some earlier studies in Europe have associated intake of n-3 fatty acids with longer pregnancies, higher birthweights, and lower recurrence of preterm delivery. The current study focuses on occurrence as well as recurrence, and addresses the question of whether beneficial effects of n-3 fatty acids extend to a non-European population. The study is scheduled to end in May 2004.
Until next time,
The March of Dimes
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