1069

9. Field CR, Schoeller DA, Brown KH. Energy expenditure of malnourished childrenduring catch-up growth. Proc Nutr Soc 1988; 47: 227-31

10 Roberts SB, Savage J, Coward WA, Chew B, Lucas A. Energy expenditure and intakein infants born to lean and overweight mothers. N Engl J Med 1988; 318: 461-66.

11. Lucas A, Ewing G, Roberts SB, Coward WA. How much energy does the breast-fedinfant consume and expend? Br Med J 1987; 295: 75-77.

12. Vasquez-Velasquez L, Prentice AM, Coward WA. Energy expenditure and physicalactivity in malnourished Gambian infants. Proc Nutr Soc 1988; 47: 233-39.

13. Fornon SJ, Haschke F, Ziegler EE, Nelson SE. Body composition of referencechildren from birth to age 10 years. Am J Clin Nutr 1982; 35; 1169-75

14 Hamill PVV. NCHS growth curves for children, birth to 18 years. US Department ofHealth, Education and Welfare publication no PHD 78-1650, Hyattsville,Maryland: National Center for Health Statistics, 1977

15. Southgate DAT, Durnin JVGA Calorie conversion factors An experimentalreassessment of the factors used in the calculation of the energy value of humandiets Br J Nutr 1970; 24: 517-35.

16 Whitehead RG, Paul AA. Diet and growth in healthy infants. Hong Kong J Paediat1988; 5: 1-20.

17. Whitehead RG, Paul AA, Cole TJ Trends m food energy intakes throughoutchildhood from one to 18 years. Hum Nutr Appl Nutr 1982; 36A 57-62.

18 DHSS Present day practice in infant feeding: 3rd Report Reports on Health andSocial Subjects 32. Department of Health and Social Security London: HM

Stationery Office, 198819 Tanner JM. Physical growth and development. In Forfar JO, Ameil GC eds)

Textbook of paediatrics, Vol 1. Edinburgh Churchill Lisingstone, 1984. 278-330.

Point of View

ADOPTION AND GENETIC PREDICTION FORHUNTINGTON’S DISEASE

M. MORRIS A. TYLERP. S. HARPER

Institute of Medical Genetics, University of Wales College ofMedicine, Heath Park, Cardiff CF4 4XN

Huntington’s disease is an inherited neurodegenerativedisorder with onset usually in middle age.! Genetic

prediction for this disease has been possible since theidentification of a cloned DNA sequence (G8) on

chromosome 4 which shows close linkage to the locus ofHuntington’s disease.2 The ethics of predictive testing havebeen well debated,3’ but little attention has been given to thepossible use of such tests in adoption practice. We havereceived several requests from, or on behalf of, adoptionagencies for predictive tests on infants at 50% risk of

Huntington’s disease.In Britain, the regulations of the Adoption Act, 1958,

provide that a "report on the health of the infant signed by afully registered practitioner must be obtained by the(adoption) society". However, the standards of examinationthat should be achieved are not defmed and there isconsiderable variation in the quality of these examinations.sGenetic prediction for Huntington’s disease was not

foreseen 30 years ago, and no code of practice with regard toadoption has been formulated. Adoption agencies state thatthey are better able to select suitable parents for a child ifthey have full medical knowledge. In addition, prospectiveparents would be able to make a more informed decision andunderstand the commitment they were to undertake. It may,therefore, be easy to believe that predictive tests wouldimprove adoption practice and be no different to otherpreplacement investigations.However, such arguments are not valid. The decision to

take a presymptomatic test for a serious and, at present,untreatable disorder of adult life should be personal andvoluntary, and not undertaken at the behest of third parties,such as adoption societies. The child’s welfare in adoptionproceedings is paramount: this principle has been wellestablished,5,6 but to test a child would be to prefer theinterests of a third party over those of the child.

Age is the second reason against testing for adoptionpurposes. Predictive testing must still be regarded as aservice under evaluation rather than one that is fullyestablished; the constraints of a research project should

therefore apply. The British Medical Association’s ethicalcode’ for research on children suggests that: "the

investigator must ask himself if the project can only becarried out with the use of children"; "the investigatorshould indicate the method he will use to obtain consent..",and "for pregnant women, infants, and children under 10years of age the requirements for informed consent shouldbe particularly stringent".

Thirdly, for Huntington’s disease in particular, manydoctors oppose the testing of minors. Recommendations ofthe International Huntington’s Association (unpublished)state that "the test is only available for individuals havingreached the age of majority". The World Federation ofNeurology working party on prediction, of which one of us(A.T.) is a member, supports this clause.A fourth reason concerns the age of onset of the disorder.

Juvenile Huntington’s disease (ie, onset before age 20) israre :8 its prevalence in South Wales, where ascertainment ofHuntington’s disease is complete, is less than 5% of allcases.9 In addition, there is no known treatment that mightmodify the age of onset or the later course of the disorder fora child who has had an adverse predictive test.

Little is known about the long-term effects of predictivetests. For adults, the consequences of an adverse result couldwell be damaging, especially for a young person for whomapplications for life insurance or employment might beaffected. For children, the attitude of parents, includingadoptive parents, might be undesirably influenced by theknowledge that child is likely to manifest the disease. Parentsmay react by being overprotective, with adverse effects onthe child’s upbringing, or may even reject the child.Nothing is known about the reactions of children who aretold that they are at high risk of being gene carriers. We doknow that many young people do not want testing at all and,of those that do, few are in their teens and early twenties:pre-adoption testing would remove their choice. Moredifficulties would arise if two or more children from a familywere to be adopted. What happens if they have different testresults? Would the children be separated? Would adoptiveparents treat them in the same way if they were kepttogether?We believe that predictive testing of children placed for

adoption and who are at risk for Huntington’s disease wouldbe against their best interests. Predictive tests for

Huntington’s disease are still under evaluation in adults;until there is clearer information on long-term outcome, oran effective treatment, to do such tests on children for

adoption purposes poses serious ethical problems and, inour view, should not be done.

Correspondence should be addressed to P. S. H.

1070

Round the World

India

FLUORIDATED TOOTHPASTES AND FLUOROSIS

From our Correspondents

AN estimated 20 million people in India are affected by fluorosis.Twelve states and the Union Territory of Delhi have been declaredendemic for this disease. It was first recognised in 1957 in the Stateof Andhra Pradesh, which continues to be one of the worst affectedareas. In addition to the skeletal abnormalities, an excess intake offluoride can damage the kidneys, liver, and nervous system. SinceIndia’s earth crust is rich in fluoride-containing minerals, fluoride ispresent in ground water, a major source of drinking water in mostIndian villages, and in some foodstuffs. It has been estimated thatfluoride levels in water in India range from 2 to 39 parts per million

(ppm) (the recommended level of fluoride in drinking water is 1

ppm).The use of fluoridated toothpastes for prevention of dental caries

in India has therefore come under heavy criticism. Mostfluroridated toothpastes on sale in India contain 1000-2000 ppm offluoride, which also arises as an impurity in raw materials, such astalc, chalk, and sodium carbonate, used in toothpaste. Suchtoothpastes are not always mixed homogeneously, so that onesqueeze from a tube may contain between 3000 and 4000 ppm. TheIndian Council of Medical Research strongly advises against the useof fluoride toothpastes in children below the age of 6 years. Yet inmultimedia campaigns makers of fluoride toothpaste in Indiaproject its use as beneficial for children. The carton of ’ColgateFluoriguard’ toothpaste manufactured by Colgate-Palmolive(India) Ltd, says "Maximum fluoride protection against cavities bya toothpaste. Colgate Fluoriguard has the world’s most provenfluoride. The special fluoride penetrates tooth enamel and

strengthens it ... to provide maximum fluoride protection againstcavities. Your family, particularly your children, will love its greattaste." A television advertisement for the same toothpaste shows acarton landing on earth from outer space and hundreds of childrenyearning to have it (compare Close Encounters of the Third Kind).

Health authorities in Kenya have banned advertisements forfluoride toothpastes under the Pharmacy and Poisons Act of Kenya.Despite strong requests and repeated reminders from researchworkers and health professionals, the Government of India has beensilent on the issue of banning advertisements for fluoride

toothpaste. But it has allocated 62-5 million under the PrimeMinister’s technology mission on drinking water for the eliminationof toxic contaminants, including fluoride, from drinking waterthroughout India by 1990.

According to Dr A. K. Susheela, of the All India Institute ofMedical Sciences, New Delhi, who is president of the InternationalSociety for Fluoride Research and national coordinator of thesubmission on control of fluorosis, a committee was appointed bythe Ministry of Health, under the chairmanship of the DrugController of India, to look into all aspects of fluoride in toothpastes.Most experts at meetings of the committee pointed to the

magnitude of the harm done in India by excess fluoride. But thedrug controller concluded the meetings with the statement, "As nocountry has banned fluoride toothpaste, why should India do it?"One proposal was that the amount of fluoride in a toothpaste should

be clearly stated on the carton and the tube, with the followingwarning: "Excess fluoride in toothpaste can be injurious to healthand may result in mottling and brownish discolouration of the teeth.Children below six are advised not to use fluoride toothpaste". Noaction has been taken.The November, 1984, issue of World Health, the WHO

publication, contained an education poster with the advice "... Usefluoridated toothpaste. In addition, either drink fluoridated water,or use fluoridated salt in cooking and have it available on the tablefor use with food. If none of these is available use fluoride tablets orrinses ..."3. It would in fact be very hard to measure and regulatethe amount of fluoride salt in cooking. In many tropical countries,where people drink much water, no additional fluoride should berequired. Clearly the message in this poster is not applicable to Indiaand other countries where fluorosis is common. The poster carriedno message about the harmful effects of excess fluoride in manydeveloping countries. Realising the damage that could be done DrSusheela wrote to the Director-General of WHO, and received areply from WHO’s chief of oral health. Stressing the optimal use offluorides, the letter said, "... We recognise as part of our oral healthprogramme, the need to reduce the intake of fluorides where there isan excessive content in the water and/or food supply. None of thesystemic forms of fluoride use, such as water or salt fluoridationsor fluoride tablet administration, are recommended for suchsituations ... However, only a small percentage of the population ineither the developing countries-contrary to your claim—or thehighly developed countries receive too much, or even sufficient,fluorides from their natural environment". This response seemed to

disregard the evidence of widespread fluorosis in the developingworld and the difficulty of controlling intake if fluoride is availableon the table as "salt and pepper". The WHO did not publish anyclarification in subsequent issues of World Health, though theOctober, 1985, issue carried a news item entitled Fluoride SocietyProtests Poster in World Health, which quoted excerpts of thecorrespondence and concluded that only a small percentage of theworld population suffered from excess fluoride intake. Thoughdisturbing case histories of children with fluorosis aggravated byfluoride toothpaste are recorded in India, WHO has not

discouraged the use of such toothpastes in India and other

developing countries.

16/5 Doctor’s Lane,Gole Market,New Delhi 110001, India BHUPESH MANGLA

SOFT SELL FOR THE PILL

WHEN "social marketing" of oral contraceptives was first

suggested in the early ’80s, some medical scientists were stronglyopposed to the idea. They felt that conditions for a safe

pill-promotion programme did not exist in India. But social

marketing has arrived, despite the objections, and advertisementson television and in the printed media have been appearing foralmost a year now. The television promotion mentions, almost as anafterthought, that professional advice should be taken before takingan oral contraceptive. A press advertisement says: "Ask the doctor,he will recommend the Pill." The products named Mala-N andMala-D are advertised in the mass media; the former is availablefree through the Government health-care system and the latter at asubsidised price through chemists’ shops. So far, advertising of thedozen or so commercial brands has not been allowed in the generalmedia. None of the advertisements mention contraindications or

possible side-effects. The press announcements refer to the

1 Harper PS Practical genetic counselling, 3rd ed. Bristol. Wright, 1988. 149-53.2. Gusella JF, Wexler NS, Conneally PM, et al. A polymorphic DNA marker genetically

linked to Huntington’s disease. Nature 1983; 306: 234-38.3 Craufurd DIO, Harris R Ethics of predictive testing for Huntington’s chorea the

need for more information. Br Med J 1986; 293: 249-51.4. Emery AEH Whether or not predictive tests? Neurology 1980; 30: 345-465. Forfar JO The role of the paediatrician in adoption medical practice. Lancet 1969, i:

1201-03

6 Pringle KML Adoption—facts and fallacies London Longmans, 1967.

7. British Medical Association. The handbook of medical ethics. London BMA, 1984.31-32.

8. Byers RK, Dodge JA. Huntington’s chorea in children. Report of four casesNeurology 1967, 17: 587-96

9. Walker DA, Harper PS, Wells CEC, Tyler A, Davies K, Newcombe RGHuntington’s chorea in South Wales. A genetic and epidemiological study ClinGenet 1981; 19: 213-21.

10. Bergman AB, Stamm SJ. The morbidity of cardiac nondisease in schoolchildren.N Engl J Med 1967, 276: 1008-13.