Milestones in Public Health: Chapter 8

8/14/2019 Milestones in Public Health: Chapter 8

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Chapter 8Advances in Maternaland Child HealthLooking BackAdvances in maternal and child health have been oneof the g rea test public health aclllcvemen ts of the 20thccmury. According to the U.S. Department of Labor andthe National Center for Health Statistics, in the ea rly1900s about one in 10 infants died before his/her firstbirthday. I3 ctween 1915 and 1997, this figure fell by morethan 90 percent. Maternal mortality rates have also experi-enced a significant decline, from :lpproxim;Hdy 850 de:lthsper 100,000 live births in 1900 to only 7.7 deaths per100,000 live births in 1997. Although improvements inmedical care were the main force behind these declines ininfant :lnd maternal monality, public health interventionsalso played an important role. These include environmentalinterventions, improvements in nutrition and living stan-dards, better surveilla nce and monitoring of disease andhigher educa tion levels.Maternal Mortality RatesMatern:ll deaths arc defined as those that OCCll r duringa pregnancy o r within 42 days of the end of a pregnancyand for which the cali se of death IS listed as a complicat ionof pregnancy, chi ldbirth or the puerperium. In 1900, onealit of every 100 pregnant women died. Maternal deathrates were highest from 1900 to 1930, ca used mainly byhome deliveries performed eithe r by midwives or generalpractitioners with poor obstetric ed ucation who knew littleabOIlt aseptic techniques. [n fact, sepsis acco unted for 40percent of th e deaths, one half ;after vaginal deliveries :lndone half after illegally induced abortions. The remainingdeaths were due to hemorrhage alld high blood pressure.Within this period. sOllle 916 dcaths were du e to thc fluepid emic of 1918. Another C:luse of maternal deaths canbe linked to COIll11l0n medical pr:acticc ill the 19205,which included excessive sllrgic:al and obstetric interven-t i o n ~ stich as induction of labor, forceps, episiotomy andcesarean deliveries. For example, Dr.J.13. De l ee of Chicago


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published an account of his "prophylactic forceps opera-tion" in which full anesthesia, delivery by forceps and man-ual removal of placenta was routine for all women, exceptthose wh o evaded his plan by having a quick and sponta-neous delivery. Following such examples, obstetricians withinsufficient skills undertook difficult surgical procedures,often with fatal results.After 1933, maternal mort:tlity rates started to decrease.During that year, the R eport on the White House Co n -fe rence on Child Health Protection, Fetal, Newborn, andMaterna l Mortality and Morbidity demonstrated a connee-tioll between poor aseptic practices, excessive operative

EI/:lll1or Raosl've/1 il l Ihe While Norlse OIl Cllild Nfl/fIll Oily.deliveries and high maternal mortality. During the 19305and 1940s, the government developed guidelines definingphysical qualifications needed fo r hospital del ivery privi-leges. These policies we re aimed to have an accreditedspecialist obstetr ician deliver every b:tby in a hospital.As a result, a shift frOI11 home to hospital deliveriesoccurred between 1938 and 1948, and the proport ion ofinfants born in hospitals increased from 55 pe rcent to 90percent. T he shift from home to hosp ital delive ries andimprovemen ts in asept ic cond itions in hospitals led to a71 pe rcent reduct ion in maternal mortality by 1948.


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During the 1950s and 1960$ medical advances broughtabout further declines in maternal mortality. These advancesincluded the use of :lI1tibiotics, oxytocin to induce labor,safe blood transfusion and better management of hyperten-sive conditions. Furthermore, legaliz:ttioll of induced abor-tions led to an 89 percent reduction in deaths from septicillegal abo rtions between 1950 and 1973. The nation:tlmaternalmorcality rate continued to decrease until 1982,when it reached a plateau. Since then, maternal mortalityrates have fluctu:J.ted between seven and eight maternaldeaths per 100,000 live births. As a result. the goal pro-posed in 1987 for Hen/lily Pc()p/e 2000 of3.3 maternaldeaths per 100,000 live births has no t been achieved. Atthe same time. the current maternity mortality rate of 7.2per 100,000 - a 99 percent decrease since 1900 - ca nnotbe underestimated.Some experts argue that the U.S. has reached a level inmaternal mortality that cannot be reasonably lowered anyfurther, but the World Health Organization estimates that20 countries have reduced their maternal mortality ratebelow that of the United States. Th e 21st century offers:tn oppo rtunity to continue the decrease of maternal deathrates, as approximately 59 percent of all U.S. matern:ddeaths can be prevented through early diagnosis :tnd appro-priate medical care of pregnancy complications . However,obstacles exist to reducing this rate. In 1996, approximately10 percent of all pregnant women received inadequate or

"Baby s/lII(k," W,lsllillgllI, o. c., d,w 1927.


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no prenatal ca re. Hi stori ca lly, the maternal mortality ratehas always been higber for black and minority womenthan for white women. For exam pl e, I II 1920 the maternalmortality rate fo r wbite women was nearly half [bat ofblack women. Cu rrently, the maternal mortality rate is 5.5per 100,000 live births for white women com pared with23 .3 per 100,000 for black wome n and 7.9 per 100,000 forH ispanic women . Interventions must be designed to createawareness of the importance of pre natal care and to appl ystra tegies to reduce persistent differences in mortality ratesbetween white and minority women.Infant Morta lity RatesT he declille lt l infant mortality is ullparalleled by any othermortality reduction in the 20th centu ry.Today, less thanone in 100 Amencan babies die in inf.lllcy. A century ago,as man y as one II I six mfants died. This incredible changeresults from a process that has roots in the 18505 wheninf.1nt mortality was first recognized as a social problem.. . During the first 30 years of the 20th century, publicht:alth, social welfart: and clinical medicine collaboratt:d tocombat inf.1l1t mortality. These partnerships began improving living conditions and the environment in urban areas,upgradi ng the quality of commercial milk and improvingmothers' abilities to c ar ry, bear and rear healthy inf.1nts. Atthe beginning of the last century, the first steps to decreaseinfant mortality were established. First, the establishmentof sewage disposal and safe drinking water were particularlyimportant in reducing inf.1nt mortality rates during theseyears. Second, milk pasteurization, first adopted in Chicagoin 1908, contributed to the control of gastrointestill:llinfections from contaminated milk supplies. T hird, infancyand materlllty programs secured federal funding, specificallyto es tablish the National C hildren's Bureau in 1912, whi chwas proposed by Martha May Elliot, among others.Martha May Elliot ( 189 1-1978) is considered a pioneerin n1:lternal and chi ld health. A gr:lduate ofJohns Hop kinsUniversity, she was a leading pediatrician and an importantarchi tect of programs for maternal and child health. Elliotdirected the National Children 's Dureau Division of Childand Maternal Health from 1924 until 1934. During hertenure, this institu tion became the primary governmentagency to work toward improving maternal and in(,1ntwclf.1re. As ea rl y as he r second year of medical school,

,During the first30 years of the20th century,public hea lth ,soc ial welfa re andclinical medicineco llaborated toco mbat infantmortality.


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, ' . . . . , ~ " ; J 151" , ,. . J , , '. -

Dr. Mllrllrll Mlly Elli(JI lIisilill.


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:ntribured to prenatal causes that occurred among high - riskneonates, especially low birth weight (LOW) and pretermbabies. This led to renewed efforts in the 1950s and 1960sto improve access to prenatal care, especially for the poor,and to concentrate efforts to establish neonatal intensivecare units and to promote research in maternal and inf:1nthealth. This research included technologies to improve thesllTvival of LBW and preterm babies. In the bte 1960s during the :tdvent of Medicaid and other federal programs,infant mortality declined substantially. From 1970 to 1979,neona ta l mortality plummeted 41 percent due to techno-logic advances in neonatal medicine and the regionalizationof perinatal services.During the early to mid 19805 the downward trend in U.S.infant mortality slowed again. In the early 1990s, inf:1ntmortality declined slightly faster due to the widespreadintroduction of artific ial pulmon ary surfactant to preventand treat respiratory distress syndrome in premature infantsand to the increased use of maternal steroids. From 1991 to1997, the decrease in infant mortality cominucd, in part ,because of reduced mortality from sudden infant deathsy ndrome (5 11)5). . . Thanks to public health autho rities recommending that infants be placed on thei r backs tosleep, S10S rates declined greater than 50 percent duringthis time. Overall, the inf:1nt mortality rJte today representsa 90 percent decreJse fiom that experienced at the begin-ning of the 20th century. Despite this incredible achievement, medic:!1 and pllblic health problems in maternal andchild health remain to be resolved, among [/lcm birthdefects, curremly the leading cause of infant mortality. Yetrhe causes for 70 percent of birth defects remain a mystery.Birth DefectsA birth defect is an abno rmality of structure, function, ormetabolism present at birth that results in physical or mcn-tal disability. Birth defects can be fatal and are the leadingcause of 111f:1nt mortality in the U.S. , accoullting for morethan 20 percent of all infant deaths. Of 120,000 U.S. babiesborn each year with a birth de fec t , 8,000 die dunng theirfirst year of life. According to a report by the NationalAC:l demy of Sciences, nearly half of all pregnancies todayresult ill the loss of the b:lby or :l child born with a birthdefect or chronic health problem. T he leading birth defects

,Thanks to publichealth authoritiesrecommendingthat infants beplaced on theirbacks to sleep,SIDS ratesdeclined greaterthan 50 percentduring this time.


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,.. .one-third ofall states have nosystem for tracking birth defects,and systems areinadequate inmost others.

associated with inf.1llt death 3rc heart defects (31 percent),respiratory defects (15 percent), nervous system defects (13percent). multiple abnormalities (13 pcrccm) and musculoskeletal abnorm:llities (7 percent). Birth defects contflbutesubst:mtially to childhood morbidity and long-term disabilityand arc also a l1l:ljor calise of miscarriages and fetal dC:lth.The true incidence of birth defects is very diffic ultto determine because of inconsistent an d incompletenational data gathering. Although surveill:lilce systemsare vital for monitoring and detecting trends in birthdefects, there has never been an effective nationwide datasystem on birth defects. The Pew Environmental H ealthCommission recendy reviewed this issue, finding thatwhile the incidence of some birth defects is increasingrather dramatically, one-third of all states have nosystem for tracking birth defects, and systems are inadequateII I mOSt oth ers. Moreover, even in states with birth defectregistries, most do nOl include children whose defects donOt become apparent until months or years after birth.In the late 1960s, the Centers for Disease Control andPrevention (CDC) started the first birth-defects surveilbnce system in the Ul1Ited St.1tcS, bu t that sys tem waslimited to the metropolitan area of Atlanta, Georgia.Since 1967, the Mctropolitan Atlanta Congenital DefectsProgr:llll (MACD P) has been monitoring all major birthdefects in five counties of the metropolitan Atlanta area(Clayton, Cobb, DeK:llb, Fulton and Gwinnett) withapproximately 50,000 annual births in a popubtioll of3bom 2.9 million. For some time, CDC used the newbornhospit:ll discll:lrge sumlll:lry and vital st3tistics to monitorbirth defects natiollwide, but both of these sys tems provedto be extremely inaccurate because many structural congenital anomalies were not accurately identified at birth.111 1983, the California Birth Defects Monitoring Programbegan an active survei llance system in the five coun ti esaround the San Francisco Bay area. Founded by Drs. JohnHarris and Ri chard Jackson in conjunction with Califo rnia 's legislature and governor, this program became amodel for surveillance in other states and 3 worldwideleader in birth defects research. Adding new counties toits surveillance area, statewide coverage was achieved ill1990. The program is now the leader in birth defects


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surveilla nce and prevention wi th more than 250 publishedfindings, ongoing monitoring of 334,000 births per yearand trailblazin g research.. . Per haps th e mOSt important advance in th e registryand prevention of birth defects data came in 1996, whenthe Co ngress directed CDC to establi sh th e Centers forBirth Defects R esearch and Prevention (C BDRP) . Formal-ized with the passage of the Birth Defects Prevention Actof 1998, CDC was 3uthOrlzed to: (1) co lleer. ana lyze 3ndmake available data on birth defects; (2) operate regionalce nters that conduct applied epi demiologic research for th epreventio n of birth defecrs; and (3) prov ide th e public withinformation on preventing birth defects . C ur ren tly, CDChas established ce nt ers in Arkansas, Ca li forn i a, Iowa , M ass-ach usetts, Ne w York, N orth Ca ro lina , Texas and Utah. Thecenters were established in states whose existin g birthdefec ts progra ms were na tionally recognized fo r expert isein birth defects survei llan ce and research .The ultimate goal of tra cki ng and research is to develop3nd implement effective programs to preven t birth defectsand developmental disabilities. Even without 3n accuratenati ona l birth defects t rac kin g system, it has been possibleto imp lement prevention camp aigns to decrease birthdefects. One e:-:ampk of a Sllccess in this area is t hena tion al folic ac id education camp aig n led by th e M archof Dimes, C D C and its partn er organi zations, such as th eSpina 13ifida Association . Preside nt Franklin R ooseveltfounded th e Ma rch of Dim es in 1938 as a national volun-tary health agency to help co mbat birth defens. This ne wmultiyear national edu ca tion campaign aims to inc reaseth e numbe r of women who take folic acid daily, and it isknown to have had an impac t. A study published in th ejm/rnal oj rhe Americall Medical A ssocia lioll in 2001 showedthat neural tube defects in newborns dec reased 19 percentbetwee n 1995 and 1999 in the wake of this camp aign.Furthermore. advan ces in neonatal tcc bn ology haveimproved the survival rate of prete rm babies wh o weighless th :m five pounds, eight Ollnces at birth.Tod ay, bi rth defects loo m as th e No. [ cause of infant dea th .T be fact that on e in 28 babies is born with a birth defectshould give t he public health co mmunity pau se. Advancesin medical treatments will co ntinue to improve t he survivalrate of babi es with birth defec ts and may co ntinu e to shi ft

,Perhaps th emo st importantadvance in th eregistry and pre-vention o f birthde fec ts data cam ein 1996 , whenth e Co ngressdirected CDCto establish theCenters for B irthDefec ts R esearchand Prevention.


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M a ~ { ! I I T 1 ' 1 Sall,{!1'f il l1916.

mortality associated with these deaths from inf:mcy to bterstages of life. However, increased funding for surveillanceand research will be necessary to develop effective programsto prevent the tragedy ofbinh defects, which occur in150,000 American families every year.Family PlanningThe hallmark of family planning in the United States inthe 20th century has been the ability to ach ieve desiredbirth spacing and family size. Smaller f.llllilies and longerintervals between births have contributed to the betterhealth of inf.l11ts, children, and women and have also im-proved the social and economic role of women. Ho wever.;lccess to effective and legal co ntracepti on has no t alwaysbeen :lVa ilablc to women. [n 1900, it was illega[ underfederal and state laws to distribute information and to coun-sel patients about contraception and contr;lceptive devices.Some sectors of society rejected this law, and the moderncontracep tive movement began.In 1912, Margaret Sanger initiated efforts to circulateinformation abo ut and provide access to contraception.Sanger was a public health nurse concerned abollt theadverse health effects of frequem childbirth , miscarriagesand abonion. In 1916, Sange r challenged the laws of theday and opened the first family planning clinic inBrookl yn. New Yo rk. The police closed her clinic, butSanger con tinued to ptomote family planning by openingmore clin ics and challenging legal restrictions during tht':1920s and 19305. The court challenge established a legalprecedent that allowed physicians to provide advice oncontraception for health reasons, and physicians gained theright to counsel patients and to prescribe contracep tivemethods. 13y the 1930s, a few state health departments(such as North Ca rolina) and public hospitals had begunto provide family planning serv ices. By 1933, the averagefamily size had declined from 3.5 to 2.3 chil dren.During thc 1940s and 1950s, new efforts arose to createeffective contracep t ive methods. In the early 1950s, JohnR.ock, a highly regarded obs tetrician and gynecologist, whograduated from Harvard Ul1lversity, and Gregory Pincus, abiologist, wh o gradu ated from Cornell University, workedtogether to create an oral contraceptive. They tested theirversion of an o ral contracepti ve pill in preliminary trials in


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Boston in 1954 and 1955.After the success of the prelimiIl :l ry tr ials for the PiJ1, Rock and Pinclls we re confidentthey had created an effective contraceptive method. Butwithout large-scale human trials, the drug would neverrece ive FDA :lpproval necessary to bring the drug COmarket. . . In the summer of 1955, Pincus visitedPue rto Rico and discove red a perfect location for thesehum: I1 trials. Puerto Rico had no anti-contraceptive lawson the books :lnd had an extensive network of birthcontrol dinics already in place.The base for the first trial was a clinic in Ri o Piedras.Puerto Rico. The Rio Piedras trials got off the groundquickly in Apnl 1956. In no timc, thc [fi:ll was filled toc:lpac ity, and expanded trials beg:lll at other locations onthe island. The pharmaceutical company G.D. Searle manu factured the pills for the trial. Rock selected a high doseof Enovid, tbe company's brand name for its synthetic oralprogesterone. to ensure that no pregnanc ies would occu rwhile test subjects were on the drug. Later, after discove ring Enovid worked bener with Slll:lll :llllounts of syntheticestrogen, that active ingredient was added to the Pill aswell.Dr. Edris R ice- Wray, :I faculty member of the Puerto R icoMedical School :lnd medica! director of the Puerto RicoFamily Planning Association, supervised the trials. Afte r ayear of tests, Rice-Wray reported good news to Pincus.T he Pill was 100 percent effective when taken properly.However, she also informed him that 17 pe rcent of thewomen in the study co mplained of nausea, dizziness.headaches. stomach pain and vomiting. So se r ious andsustained were the s i d ~ effects that Rice-Wray told Pin custhat :I 10 milligram dose of Enovid caused "too many sidereactions to be generally acceptable."R ock and Pincus quick ly dismissed Rice - Wray's conclusions . Confide nt in the safety o f the Pill, Pin clLs and R ocktook no action to :lSSess the rOOt cause of the side effects.As a result. in later years, Pincus ' team would be acclLsedof deceit, coloni:tlism and the exploitation of poor womeIlof co lot. T he wo men had been told only that they weretaking a drug that prevented pregnancy and were no t toldthat they were involved in a clinical trial, [hat the Pill wasexperimental and that potent i:llly dangerous side effectswere possible. Pincus and Rock, however. believed they

In the SUlllmerof 1955, PinC LISvisited PuertoR..ico and discovered a perfectlocation for thesehUl1l:lIl tr ials.


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1960 WI/IMrcprirl{' pills.

were followi ng the appropriate ethica l standards of thetime. To this day, questions linger ove r whe th er Pin cusand R ock, in their rush to bring an effective pill tomarket , overlooked se r ious side effects from the anginalhigh- dosage Pill during trials. Th e cttrrent dosage of o ralcontraceptives has been dramatically lowered, and tbe incidence of serious side effects has been greatly reduced.[n [960, the era of modern co ntrace pti on began whenboth the birth co ntrol pill and the intrauteri ne devi ce(IUD) became available. These effective and convenientmethods res ulted in widespread chan ges in birth co mroland socia l behavior. By 1965, the Pill had become themost popular binh control method, followed by the co ndom and co ntraceptive steri li zation. Mea nwhile , th e IUDfell out of favo r following repons that sterility might resultif th e device was improperly implanted or monitored. Infact, lawsuits caused bankruptcy of the m:l.l1uf:tcturer ofthe popular Dalkon Shield. It would be decades untilnewer, safer IUDs were reintroduced to the m:trket asa co ntraceptive op tion.In 1970, federal funding for family planning se rvices wases tablished under the Family Planning Services andPopul ation R esearch Act. which crea ted Title X of thePublic H ea lth Service Ac t. Durin g this period. the Sup remeC ourt finally struck down state laws prohibitin g co ntraceptive use by married coupl es . Medicaid funding for f.1milyplanning was author ized in 1972. Services prov id ed underTitle X grew rapidly in the 1970s and 1980s; after 1980,public funding for family planning continued to shift tothe Medica id prog ram. Since 1972 , th e average fa mil ysize has kveled ofT at app roxi mately two children, and thesafety, efficacy, dIversity, accessibility and use of contracepti ve methods have increased. In the late 19905, legislatures111 19 states mandated partial or comprehensive insurancecoverage for reversible methods of co ntraception. Accessto high -q uality contracept ive se rvices will continue to bean important factor in promoting healthy pregnancies andpreve nting unintend ed pregnancy in this co untry. 0


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Case StudyFolic AcidEach year, spina bifida or anencephaly, the tw O most common forms of neural-tube defects. occurs in on e in 1,000pregnancies in the U.S. Anencephaly and Splll3 bifid:l,which affect approximately 4,000 fetuses each yC:lf , :arcimportant factors in fetal and infant mor tality. All infamswith anencephaly arc stillborn or die sho rtly afte r birth;whereas, many inf.1nts with spina bifida now surv ive asa resu lt of extensive medical and surgical care. However,inf.1nts with spina bifida wh o survive are likely to havesevere, lifelong disabilities. In addition to the emotionalcost of spina bifida, the estimated monetary COst is staggering. In the U.S, alone, the total cost of spina bifid:! ove r alifetime for affected inC'l.Ilts born in 1988 was almost $500million or 5249,000 for each inf.lI1t.

A d,>C/or eXalll ill l'S (I child wif/, spilla bifida at a clillic lIear Brolllllslli/k,Je.\,H, all fire U.S.-II/lexica borda,Although these severe conditions have been recognizedsince antiquity, never before has progress been as fast andsubstantive as in the last three decades, particularly in thearC:l of prevemion, During th:lt time, evidence mountedthar viC:lmin suppl emcnts in thc C:lriy stages of pregnancyco uld prevent nCllf:ll-tlIbe defects, In 1976, Dic k Smitbells:lnd colleagues in the United Kin gdom reponed thatwomcn wh o gave birth to babies with neural-tube defects


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,.. . amongwomen whohad previouslyhad :m affectedpregnancy, thosewh o took a mult i-vitamin duringthe early stages ofpregnan cy had an86 percent lowerrisk of bavinganother affectedfet us or inf:1l1tthan those wh odid no t take themul tivitamin.

had low serum levels of micrOlllltrients, including somevitamins. These findings led them to propose a randomizedcontrolled trial of vitamin supplemen tat ion . . . Asa result, in 1983 they ft.'portcd that among wom en wh ohad previously had an aITected pregnancy. those whotook a Illultivit;lmin during the early stages of pregnancyhad an 86 percent lower risk of baving another affectedfet us or inf:1nt than those who d id no t take th e multivitamin . Ho wever, because Smithel ls an d co lleagues had no tbeen permitted to randomly assign the use of the multivitamin among participants in their study, their finding di dno t lead to public action.In f.1c[ , act ion was ddayed until the publication of tworandomized, peer-reviewed studies a decade later. In1991 , a randomized controlled trial funded by the l3ritishMedi cal R esearch Council demonstrated that foli c ac idsupplementation before pregnancy and during its ea rlystages marked ly reduced the risk of neural-tube defects innewborns. This finding led the Public Health Service andC DC in 1992 to recommend that all women who areplanning to become pregnant take folic acid supplementsbeginning before pregnancy and continui ng through itsearly stages. C DC directs its recommendation :l.t wome nof childbearing age, because as many as 50 percent ofpregnanc ies in the U.S. are unplanned. Th e evidence sug-gests that folic acid supplementation must begin beforepregnancy to protect against neural-tube defects.Publi c health officials have cons idered three approachesro achieving CDC's recomme ndation for a dai ly foli c ac idinrake of 0 .40 milligrams (Illg): (1) promoting daily usc ofvitamin supplements that co ntain folic acid, (2) promotingdi etary int ake of foliate-rich foods, an d (3) fortifying foodwith folic acid. A landmark public health decision by th eFood and D rug Administration allowed the third approachto be implemented in January 1998. T h ~ FDA Inandatcdthat all enri ched grain products, sllch as noms and pastas.must also be fortified with 140 micrograms (!-Ig) of folicacid per 100 g rams grain . Tht: measurement was based onthe estimate rh:n the average Amcrican wom:l.Il of reproductive agc would consume about 100 !-Ig of folic ac id perday from foods co ntaini ng enriched grain products. Thispublic health decision has proved to be a success. Thea.ddition offolic acid to commonly eaten foods has


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dramatically reduced by 50 pcrcent th e incidence of spina!bifida in newborns. More important, the cOSt of fortifica-tion is small. In the U.S . it costs about on e cent pe r personpcr year, or about S1 000 per neural-tube defect prevented,which represents less than one percent of the total costof spina bifida over a lifetime for each infant affected .R ega rdless of the method chosen to increase folic :J.Cidintah:, the full potential of preventing neural-tube defectscan be realized only if women in crease their intake of folicacid supple mentation at the correct time of pregnancy.[n 1998, acco rding to Gallup surveys commissioned by theMarch of Dimes, most women were taking folic :acid tOOlate to red uce their risk of having a baby with a neuraltube defect. The surveys showed a steady increase ill thenumber of women who had heard of folic acid, bm noincrease in th e number of women taking a multivitamineve ry day. However, this trend has changed with time andthe hard work of organizations see kin g to increase women'sintake of folic :a cid. According to the March of Dime'slatest su rvey publ ished in a September 2004 Morbidil), &lv/ortn/iIY Weekly Reporl, :l record 40 percent ofAmerican women of childbear ing age reported t:lking ad:lily multivitamin co ntaining folic acid in 2004, lip from32 percent in 2003, and the highest level since the Marchof Dimes began surveying women in the 19905.Dr. Jennifer L. Howse, president of the March of Dimes,recenrly sa id that the latest survey shows that women tOdayseem to understand the importance of folic acid to thehealth of babies. This means that women wh o ll1ightbecome pregnant in che United States are aware of thebenefitS of folic acid intake and are taking this prevcmivcap proa ch. Increasing foli c acid intake represents a majorstep in reducing infant monality and morbidity and is oneof the 20th cen tury 's dearest public health successes. 0

,. 1 record 40 perce nt of Americanwomen of childbearing agereported taking adaily lllultivitamincontaining folicacid in 2004 ....


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VignetteAmniocentesisThe tapping of amniotic fluid has been practiced for more than 100years .Transabdominal amniocentesis in the third trimester of pregnancy was first reported in the literature in 1877. For today's pregnantwoman, having amniocentesis, or "amnia," is an important decisionthat she must make between 15 and 18 weeks of pregnancy. Amniocentesis is the most comlllon pren:ltal test lIsed to diagnose chromo-somal and genetic birth defects and has an accuracy rate of between99.4 percent and 100 percent in diagnosing chromosomal abnormalities. Amnia is recommended for women over : l g t 35 because th e riskof chromosom e disorde rs increases with maternal age. The test is alsorecommended to women who have had a previolls child with a birthdefect that amniocentesis can diagnose, a family history of a geneticdisorder or an abnormal triple-screen blood test result.In 1956, in their seminal article in th e journal NlIIurc, F. Fuchs andJ.Riis reported the first use of amniotic fluid examination in the diagnosis of ge netic disease. They determined fetal sex from ce lls found inamniotic fluid , based on th e presence or absence of tile Bar r body (aninactive X-chromosome found in the nuclei of somatic cells of mOStfemale mammals). That same year in the United Kingdom, Joh nEdward also discussed for rhe firSt time the possibility of the "ante-natal detection of hereditary disorders."The determination of fetalsex led to the prenatal management of patients with Haemophilia Ain 1960 and Du cllenne muscular dystrophy in 1964.In their p:lpcr in The Llllec' in [966, the researchers M. W. Steelean d W. R. Breg demonstrated that cultured amniotic fluid cellswere suitable for karyotyping.ln 1972, DavidJ.H. Brock and Rog erSutcliffe discovered that excessive amounts of alpha-fNoprotein(A FP) were present in tbe amniotic fluid of pregnancies with neuralrube defeC[s. But a study in The New ElIglll/1d JOHnln/ ofMedie;lIc in1970 by H enry N:l.dler an d Albert Gerbie was the real impetus ingenetic amnioce nt esis and diagnosis. Following the publication oftheir article, ';Role of amniocentesis in the intrauterine di:lgnosisof gene tic defects," genetic laborato ries for analysis of amnioticfluid became prevalent :1nd included the detection of chromosomal:lbnormaliries, X-Linked conditions, inborn erro rs of mct:l.bolism':l.Ild neural-tube defects.Thanks to advances in technology, amniocentesis tOday is a safetest for both mother and ferus; although, a small risk of miscarriage

161


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162 Mlicstones C h ~ p t n 8 M31crnal ~ n d Child Ht', I!h . Vill"


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i'vIlICMonc' Chap!a a M,1fcrll,,1 aud Clnld H",lth I nnkon g AI1l'ad I 63

Looking AheadGenetic ScreeningStatC newborn screening systems were the first geneticsprograms for children, and they remain the largest. Nat ionwide, state public health prograllls screen an estimatedfour million infants anl1ullly for genetic disorders, ElChyell' lPproxim:neiy 3,000 babies with severe di50rders aredetected due to newborn screening programs, Undetectedand untreated abnormalities can result in mental retardation, severe illness and premature death. State newbornscreening programs lI1volve testing, (allow-up, diagnosis,treatment and evaluation.As public health initiatives, newborn screening programsfocus resources 011 treatable conditions that occu r rdativelyfrequently. Curremly, tests arc available for 29 genetic andmetabolic diseases, but moS[ babies arc not tested for allof these disorders because policies regarding ge netic testingvary frOIll stat e to state. Advances in technology, p:lrticularlyin genet ics and metabolic research, will enable testing fornumerous abnormalities. These disorders include: carnitinellpt:lke defect (CUD), congenit:ll adren al hyperplasia(CAH), cystic fibrosis (CF), heaTing defiCIency, maplesyrup urine disease (MSUD), phenylketOtluril (PKU)and sickle cell anemia (SeA).Genetics is growing in importance as the publtc becomcsllIore knowledgeable and more demanding of geneticservices, and as the knowledge of ou r genes and their functions permits more effective strategies for treatlllellt andespecially for prevention, the special responsibility ofpublic health. As genetic research yields vaSt lllforrnatiollabout sequcnces, mutations and variation, the publichealth sciences will be called upon to int('rprct clinicalsignific:lncc in the context of cnvironmental, metabolic,nutritional :lnd behavioral risk factors,The prevention of human disease is a time-honored andhonorable goal of public hohh professionals. What mightit mean, however, to use the special tools and authoritiesof public health agencies to attcmpt to prevent geneticdisease? Many approaches to prevcntion are possible, bu tattempts to locate them within traditional public health

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categories like "prima ry, secondary and tertiary" prevent-ion have been confusing. It is important to distinguishbetween two definitions of "prevention" that are oftenlIsed in public health genetics: "phenotypic" preventionand "genotypi c" prevention.Phenotypic prevention desc ribes medical efforts to delayor stop the clinica l manifestations of a genetic disease inan at-risk patient, such as newborn screening and dietarytreatment for PKU. Genotypic prevention, on the otherhand, describes efforts to avoid the transmission of panic ll \ar genotypes from olle generation to the next. Genotypicprevcmion can include pregnancy termination or the deci-sion nOt to have children. These decisions havea profound impact on prospective parents as individualsand as part of society, as they can affect the incidence ofa dise:lse in the larger popll l:ttion.From a public health perspective, dIe eth ical issuessurrounding genetic counseling include:I. Autonomy. Thc right of individuals to act freely

with adeq uate information.2. Non-Malfeasance. The concept of "do no harm:'3. Beneficence and Justice. In formation should be

helpful and aV:lil:tble to all.4. Confidentiality. AlI information is private and no tto be sh ared with others.In 1997, C DC created the Office of Genomics andDisease Prevention to 11Ighlight the emerging role ofgenetics in the practice of public health in the UnitedStates. The office provides internal coordination andpromOtes ext ern al partnerships in activities rela ted togenetics, d ise:lse prevention and health promotion.Prevention includes the use of medical, beh:lvioral,:lnd envirolllnent:tl interventions to reduce the riskof d isease among people susceptible bec:lusc of thcirgenetic makeup. This office su pports the responsibleusc of genetic tests :tnd services, including adequ:ttet:1l11ily history assessmen t and genetic counseling. topromote health and prevent disease in diffe rentcommunities.

,These decisionsh3ve a profoundimpact 011prospective par-ents as Individualsand as p:lrt ofsoc!ety .. ,.


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Dr. AllfII ROSCIifil'ld,dflllt q{ litr MailmallSr/Jao/ oj Pub/ifHe/lltll , C I ~ / u m b i a Ullil'crsiIY

,"These advanceshave dramaticallyimproved the livesof women in theUnited States,sparing them theunnecessarily highrisk of death anddisability thatwomen II I Illanyresource-poorcountr ies inAfrica, As ia andLatin Americastill (,1ce."

The public health approach to genetic screening pbcesmajor emphasis on preventing the occurrence or manifestation of a partinllar disorder. If this proves not to befeasible, a secondary approach is to identify high-riskindividuals and institute a program of early screeningfollowed by active treatmell[ to minimize any cri ticalexpresSIOn of the condition. This Illodel works reasonablywell and is ethically acceptable when the disorder to betreated will have serious, irreversible or possibly lethaleffects in the individuals affected. In thest' situa tions, therisk / benefit ratios will more than likely benefit the individuals identified as at-risk or affected.The same cannot be said of the person screened if thedisorder identified will not manifest itself for a numberof years. if the treatment available may be of questionablevalue or if no effective intervent ion is known. The issuebecomes even more complex when the screening resultplaces the individual merely in a catego ry of increasedrisk to develop the condition.Dr. Allen R oscnfidd, dean of thc Mailman Sc hoo! ofPublic Health at Columbia Unive rsity 3nd noted authorityon maternal and child health, observes, "20th century medical advances, together with universal access to m:nernityca re, can now prevent the most common labor complications from becoming life- threatening. T h e _ ~ e advanceshave d ramaticllly improved the lives of women in theUnited St3tes, sparing them the unnecessarily high riskof death and disability that women in many resource-poor co untr ies in Africa. Asia and Latin America st ill f..1ce."'Rosenfield cont inu es, 'While current stat e-of- th e-artadvances ha ve been of great Importance, basic interventionscan help women experiencing complicat ions when morcsophisticated options an: no t available. Programs have beendeveloped in resource-poor coun tri es to pro vide access toeme rgency obstetric care, including cesarean sections, treatment ofpostpartulll hemorrhage and infection, and management of the complications of unsafe abortions to womenwhose complications would otherwise cause death or disability."Jn othcr words. advanccs in maternal and child health oweas mu ch to sound public health practices as to nt'W technologies. In order to realize its promise, genc tic screening

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Milestones in Public Health: Chapter 8

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