Eugenics and human rights

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save on the cost of caring for them. The progressivesand the conservatives found common ground inattributing phenomena such as crime, slums, prostitu-tion, and alcoholism primarily to biology and inbelieving that biology might be used to eliminate thesediscordances of modern, urban, industrial society.

Race was a minor subtext in Scandinavian andBritish eugenics, but it played a major part in theAmerican and Canadian versions of the creed. North

American eugenicists were particularly disturbed bythe immigrants from eastern and southern Europewho had been flooding into their countries since thelate 19th century. They considered these people notonly racially different from but inferior to theAnglo-Saxon majority, partly because their represen-tation among the criminals, prostitutes, slum dwellers,and feebleminded in many cities was disproportion-ately high. Anglo-American eugenicists fastened onBritish data indicating that half of each generation wasproduced by no more than a quarter of marriedpeople in the preceding generation, and that theprolific quarter was disproportionately located amongthe dregs of society. Eugenic reasoning in the UnitedStates had it that if deficiencies in immigrants werehereditary and eastern European immigrants out-reproduced natives of Anglo-Saxon stock, then inevita- bly the quality of the American population woulddecline.

Positive and negative eugenics

Eugenicists on both sides of the Atlantic argued for atwo pronged programme that would increase thefrequency of socially good genes in the populationand decrease that of bad genes. One prong was posi-tive eugenics, which meant manipulating humanheredity or breeding, or both, to produce superiorpeople; the other was negative eugenics, which meantimproving the quality of the human race byeliminating or excluding biologically inferior peoplefrom the population.

In Britain between the wars, positive eugenic think-ing led to proposals (unsuccessful ones) for familyallowances that would be proportional to income. Inthe United States, it fostered fitter family competi-

tions. These became a standard feature at a number ofstate fairs and were held in the human stock sections.At the 1924 Kansas Free Fair, winning families in thethree categoriessmall, average, and largewereawarded a governors fitter family trophy. Grade Aindividuals received a medal that portrayed twodiaphanously garbed parents, their arms outstretchedtoward their (presumably) eugenically meritoriousinfant. It is hard to know exactly what made these fami-

lies and individuals stand out as fit, but the fact that allentrants had to take an IQ test and the Wasserman testfor syphilis says something about the organisers viewsof necessary qualities.

Much more was urged for negative eugenics, nota-bly the passage of eugenic sterilisation laws. By the late1920s, sterilisation laws had been enacted in two dozenAmerican states, largely in the middle Atlantic region,the Midwest, and California. By 1933, California hadsubjected more people to eugenic sterilisation thanhad all other states of the union combined. Similarmeasures were passed in Canada, in the provinces ofBritish Columbia and Alberta. Almost everywhere theywere passed, however, the laws reached only as far asthe inmates of state institutions for the mentally handi-capped or mentally ill. People in private care or in thecare of their families escaped them. Thus, the lawstended to discriminate against poorer people andminority groups. In California, for example, the sterili-sation rates of blacks and foreign immigrants weretwice as high as would be expected from theirrepresentation in the general population.

Society before individual rights

The sterilisation laws rode roughshod over privatehuman rights, holding them subordinate to anallegedly greater public good. This reasoning figuredexplicitly in the US Supreme Courts eight to one deci-

sion, in 1927, in the case of Buck versus Bell, whichupheld Virginias eugenic sterilisation law. JusticeOliver Wendell Holmes, writing for the majority,averred: We have seen more than once that the publicwelfare may call upon the best citizens for their lives. Itwould be strange if it could not call upon those whoalready sap the strength of the State for these lessersacrifices, often not felt to be such by those concerned,in order to prevent our being swamped with incompe-tence. It is better for all the world, if instead of waitingto execute degenerate offspring for crime, or to letthem starve for their imbecility, society can preventthose who are manifestly unfit from continuing theirkind. The principle that sustains compulsory vaccina-tion is broad enough to cover cutting the Fallopian

tubes. . . . Three generations of imbeciles are enough.1

In Alberta, the premier called sterilisation far moreeffective than segregation and, perhaps taking a leaffrom Holmess book, insisted that the argument offreedom or right of the individual can no longer holdgood where the welfare of the state and society isconcerned.2 3

Sterilisation rates climbed with the onset of theworldwide economic depression in 1929. In parts ofCanada, in the deep south of the United States, andthroughout Scandinavia, sterilisation acquired broadsupport. This was not primarily on eugenic grounds(though some hereditarian-minded mental health

Charts illustrating the inheritance of socially deleterious traits, and the imperative importanceof getting rid of them, were often displayed at the eugenics exhibits at American state fairs

Education and debate

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professionals continued to urge it for that purpose) buton economic ones. Sterilisation raised the prospect ofreducing the cost of institutional care and of poor

relief. Even geneticists who disparaged sterilisation asthe remedy for degeneration held that sterilising men-tally disabled people would yield a social benefit because it would prevent children being born toparents who could not care for them.

In Scandinavia, sterilisation was broadly endorsed by Social Democrats as part of the scientificallyoriented planning of the new welfare state.AlvaMyrdalspoke for her husband, Gunnar, and for numerous lib-erals like themselves when in 1941 she wrote, In ourday of highly accelerated social reforms the need forsterilization on social grounds gains new momentum.Generous social reforms may facilitate home-makingand childbearing more than before among the groupsof less desirable as well as more desirable parents.

[Such a trend] demands some corresponding correc-tive.4 On such foundations among others, sterilisationprogrammes continued in several American states, inAlberta, and in Scandinavia well into the 1970s.

Eugenics under fire

During the interwar years, however, eugenic doctrines were increasingly criticised on scientific grounds andfor their class and racial bias. It was shown that manymental disabilities have nothing to do with genes; thatthose which do are not simple products of geneticmake up; and that most human behaviours (including

deviant ones) are shaped by environment at least asmuch as by biological heredity, if they are fashioned bygenes at all. Science aside, eugenics became malodor-

ous precisely because of its connection with Hitlersregime, especially after the second world war, when itscomplicity in the Nazi death camps was revealed.

All along, many people on both sides of the Atlan-tic had ethical reservations about sterilisation and weresqueamish about forcibly subjecting people to theknife. Attempts to authorise eugenic sterilisation inBritain had reached their high water mark in thedebates over the Mental Deficiency Act in 1913. Theyfailed not least because of powerful objections fromcivil libertarians insistent on defending individualhuman rights. More than a third of the American statesdeclined to pass sterilisation laws, and so did theeastern provinces of Canada. Most of the Americanstates which passed the laws declined to enforce them,and British Columbias law was enforced very little.

The opposition comprised coalitions that varied incomposition. It came from mental health professionalswho doubted the scientific underpinnings of eugenicsand from civil libertarians, some of whom warned thatcompulsory sterilisation constituted Hitlerisation.Sterilisation was also vigorously resisted by RomanCatholicspartly because it was contrary to churchdoctrine and partly because many recent immigrants tothe United States were Catholics and thus dispropor-tionately placed in jeopardy of the knife. For manypeople before the second world war, individual human

The family of AB Rollins, winner in the large family class at the Texas state fair, 1925


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rights mattered far more than those sanctioned by thescience, law, and perceived social needs of the era.

The revelations of the holocaust strengthened themoral objections to eugenics and sterilisation, and sodid the increasing worldwide discussion of humanrights, a foundation for which was the Universal Decla-ration of Human Rights that the General Assembly ofthe United Nations adopted and proclaimed in 1948.Since then, the movement for womens rights and

reproductive freedom has further transformed moralsensibilities about eugenics, so that we recoil at themajoritys ruling in Buck versus Bell. History at theleast has taught us that concern for individual rights

belongs at the heart of whatever stratagems we maydevise for deploying our rapidly growing knowledge ofhuman and medical genetics.

Competing interests: None declared.

1 Buck v Bell [1927] 274 US 201-7.2 Christian T. The mentally ill and human rights in Alberta: a study of the

Alberta Sexual Sterilisation Act. Edmonton: Faculty of Law, University ofAlberta,nd: 27.

3 McLaren A. Our own master race:eugenics in Canada, 1885-1945. Toronto:

McClelland and Stewart, 1990.4 Broberg G, Roll-Hansen N, eds. Eugenics and the welfare state: steriliza-tion policy in Denmark, Sweden, Norway, and Finland. East Lansing:Michigan State University Press, 1996.

(Accepted 1 July 1999)

North-South research partnerships: the ethics of carryingout research in developing countries

Tessa Tan-Torres Edejer

The new phase of North-South research collaborationwas caught in a snapshot published recently in a popu-lar weekly newsmagazine.1The picture is that of a par-ticipant in an AIDS study in Guatemala City. He looksjaunty, even confident. In 1997, he participated in alife-and-death lottery, as the article is entitled, andbeat the odds to be entered into a Merck drug trial ofdifferent doses of a triple cocktail containing their newdrug, Crixivan. He was one of only 59 patients whowere lucky enough to be entered into a trial,among themany who join the scramble for cutting edge medica-tions in a country where there arent nearly enough ofthem to go around. The clinic caring for him takes upthe slackfor example, by enlisting its patients in drug

studies.I felt myself stabilizing [he said]. I had the energyto go back to work. However, his future, as well as thefutures of the rest of the participants who participatedin and benefited from the study, is uncertain. The yearlong study ended last September, and the leftovermedicine will run out in the fall. Participants say theywere led to believe that the company would supplythem the drugs for the rest of their lives. Merck and theclinic doctors say the only promise was that thecompany would try to offer more drugs after the study,and the company did agree to provide Crixivan for fiveyears. But the patients have to come up with the othertwo components of the cocktail on their own. Thatwont be easy. Participants worry that if they go off the

drugs the virus will emerge stronger and moreresistant to the drugs.

It is perhaps inevitable that AIDS will provide thebackdrop for much of the rethinking that is going onwith regard to research done by the North in develop-ing countries. In 1998, HIV/AIDS ranked number fouramong the top 10 causes of the global burden ofdisease, accounting for 5.1% of the total disabilityadjusted life years. The burden is borne overwhelm-ingly, 98.6%, in middle income and low incomecountries.2 In developed countries AIDS has become ahigh profile disease primarily because of strong andpersistent advocacy. Aside from being a major burden,

HIV/AIDS is a highly fatal disease, and the cost of

drugs to stall the progress of the disease ishighbeyond the reach of many low income countries,where the average per capita expenditure on health isless than half of the $US12 that the World Banksuggests will fund an essential package of public healthand clinical services.3

Claims and counterclaims

Two years ago a controversy erupted over a report andan accompanying editorial that claimed that it wasunethical to use placebo controls in studies in develop-ing countries on the prevention of perinatal transmis-

Summary points

North-South research collaboration is currentlyplagued by differing interpretations of ethicalstandards of doing research in developingcountries and by inequitable funding, with only10% of global research funding going to diseaseswhich comprise 90% of the global burden

Health research is a public good, and the burdenand benefits of doing health research should beshared equally by the North and South partners.

Three guideposts

Think action. Think local. Thinklong termcan be used to resolve ethical dilemmasand address inequities in research funding

Scientific advances are not the only yardstick tomeasure the success of North-South researchcollaboration: the choice of identified priorities asareas of work, the sustainability of the studiedinterventions outside the research setting, and theinvestment in local research capacity are becomingequally important as indicators of success


Global Programmeon Evidence forHealth Policy,World HealthOrganisation,CH-1211 Geneva27, Switzerland

Tessa Tan-TorresEdejermedical officer/scientist

[email protected]

BMJ1999;319:43841

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Eugenics and human rights