J7ournal of medical ethics 1994; 20: 157-164

Distinguishing genetics and eugenics on thebasis of fairnessFred D Ledley Baylor College ofMedicine, Houston, Texas, USA

Author's abstractThere is concern that human applications of moderngenetic technologies may lead inexorably to eugenicabuse. To prevent such abuse, it is essential to haveclear, formal principles as well as algorithms fordistinguishing genetics from eugenics. This workidentifies essential distinctions between eugenics andgenetics in the implied nature of the social contract andthe importance ascribed to individual welfare relative tosociety. Rawls 's construction of 'justice as fairness ' isused as a modelfor how a formal systems of ethics canbe used to proscribe eugenic practices. Rawls's synthesiscan be applied to this problem if it is assumed that in theoriginal condition all individuals are ignorant of theirgenetic constitution and unwilling to consent to socialstructures which may constrain their own potential. Theprinciples offairness applied to genetics require thatgenetic interventions be directed at extending individualliberties and be applied to the greatest benefit ofindividuals with the least advantages. These principlesare incompatible with negative eugenics which wouldfurther penalize those with genetic disadvantage. Theseprinciples limit positive eugenics to those practices whichare designed to provide absolute benefit to thoseindividuals with least advantage, are acceptable to itssubjects, andfurther a system of basic equal liberties.This analysis also illustrates how simple deviations fromfirst principles in Rawls's formulation could countenanceeugenic applications ofgenetic technologies.

IntroductionIt is difficult to consider the ethical or socialimplications of modern genetics without confront-ing the potential eugenic implications of thesetechnologies (1,2,3,4). Western society remainssuspicious of genetic manipulation; haunted by thespectre ofthe holocaust and the a posteriori recognitionof society's acquiescence to this most systematic andpremeditated of modem atrocities. Concern abouteugenics is reinforced by the perception that racismand prejudice continue to influence public policy, as

Key wordsGenetics; eugenics; medical genetics; justice as fairness.

well as persistent popular sympathy for seeminglyeugenic notions espoused by various nationalist,ethnic, religious, or economic doctrines. It is aconcern reinforced by the knowledge of the ethniccleansing in the Balkans. Geneticists and ethicists arealso aware that many modern institutions of geneticsevolved directly from those of eugenics (5,6).Some social commentators believe that modern

genetic technologies could foster a new era ofeugenics, and that the only way to prevent thesetechnologies from becoming tools of eugenicdiscrimination is to restrict, or even ban, theirapplications to humans. To deny the application ofmodern genetics to human problems, however, alsodenies a therapeutic and egalitarian potential; onewhich may be used to prevent pain, suffering, andpremature death in those who are afflicted bydisease; and one which may be used to amelioratethe differences between those born with congenitalhandicaps and those fortunate to be born with thefull spectrum of human potentials.

If we are to harvest the healing potential ofmolecular genetics without risking a renewal ofeugenic abuse, we must identify formal boundariesbetween genetics and eugenics and establish formalmechanisms for judging whether proposedinterventions are eugenic in their nature. It is notsufficient to have good intentions. We must buildfences between the traditional path of medicaltherapeutics and the much-feared slippery slope ofeugenic exploitation.The premise of this essay is that there are formal

philosophical differences between genetics andeugenics. These differences are apparent in theimplied nature of the individual's relationship withsociety and the significance ascribed to theindividual in measuring the well-being of society.This essay explores whether it is possible toformulate an ethical basis for human genetics whichrecognizes these fundamental distinctions betweengenetics and eugenics.

The definition of eugenicsThe term 'eugenics' has many connotations, rangingfrom genocide, to the genetically programmed births

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of Huxley's Brave New World, to forced sterilizationof individuals thought to be 'defective', to commonforms of social prejudice and discrimination. SirFrancis Galton, the founder of eugenics, provided aclassic working definition of eugenics in hisendowment of the Galton chair in Eugenics atUniversity College, London:

'The study of aegis under social control that mayimprove or impair the racial qualities of futuregenerations either physically or mentally' (7).

While the terminology used in Galton's definition issomewhat archaic, this definition is consistent withcommon dictionary definitions of eugenics such as:

'a science that deals with the improvement ofhereditary qualities in a series of generations of arace or breed especially by social control of humanmating or reproduction' (8).

These definitions of eugenics describe both 'negativeeugenics', involving discrimination against thereproduction of individuals with perceived handi-caps, and 'positive eugenics', involving manipula-tions to increase the fraction of people presumed tohave superior inheritance. It should be noted thatthese formal definitions of eugenics may notsubsume the colloquial use of the term eugenics as asynonym for many forms of social discrimination. Itshould also be noted that Galton's usage of the word'racial' in the context of eugenics should beconsidered synonymous with the word 'genetic',which had not at that time been coined, and is not anexplicit reference to racial groups.Two aspects of these definitions can be used to

differentiate genetics and eugenics. First, whataspects of genetics are properly under social control?Do they include reproductive freedoms, freeassociation in marriage, privacy in childbearingdecisions, or survival to (or beyond) childbearingage? Second, how are 'racial qualities' measured? Isthe appropriate measure a statistical distribution of apopulation, or is it a measure of the individualcharacteristics or capabilities shared by all citizens?These two aspects will be addressed in thesucceeding sections.

Eugenics and the social contractThe first difference between eugenics and geneticsarises from the assumed nature of social control. Thefear that modem genetic technologies could becomean instrument of eugenic practices relates largely tothe concern that genetics may contribute toinstitutionalized discrimination, social prejudice, orlegislated limitations on individual rights.The nature of social control is obviously a major

issue in western philosophy. While this issue isgenerally addressed in the context of separating the

rights and responsibilities of governments and theircitizens, the same logical structures which define theboundary between the legitimate and illegitimateextensions of the state may be applied in consideringthe boundary of social control over the individual'sgenetic constitution and procreation. Withoutreviewing the many important constructions of thesocial contract, it may be generalized that systemswhich emphasize the right of the sovereigngovernments, incorporated body politic, or demo-cratic majority, to impose policies on individuals inthe interest of the perceived general welfare oftenassume a considerable degree of social control overgenetic liberties. Galton's assumption that thereexist social controls which may be used to alter thecharacteristics of the population is not incompatiblewith social practices which countenance socialcontrol over marriage across racial, ethnic, orreligious boundaries, family size, birth control,immigration, or emigration.

Even in the liberal democratic societies of thewest, which traditionally emphasize the free will andrights of the individual, eugenic doctrines werewidely accepted during the first half of this centuryand contributed to overtly eugenic social policiesconcerning miscegenation, immigration, andinvoluntary sterilization. There remains considerableapprehension about the safety of genetic liberties.Many view the social Darwinist tendencies of theunrestricted free market to be a form of eugenics.Some view society's inattention to the dispro-portionate infant mortality rate and reduced lifeexpectancy of minority groups as a form of passiveeugenics (4). For many, the resurgence of ethnicintolerance, anti-semitism and fascism, along withnationalism in post-communist Europe, makes veryreal the possibility that nationalist, ethnic, or evenreligious movements could come to sanction overtlyeugenic principles.

While medical genetics, unlike eugenics, does notpresuppose the existence of any form ofinstitutionalized social control over genetic liberties,certain aspects of medical care and practice aresometimes accused of being potentially eugenic. Forexample, there is fear that insurance companies andemployers could become agents of eugenic practicesif information from genetic testing is unprotected.There is also fear that legislation which limits accessto health care for certain diseases could be a form ofeugenics.

Is there a genuine risk of contemporaryphilosophy, ethics, and jurisprudence sanctioningsocial control over genetic liberties? This questionmust be answered by critically assessing theprinciples which underlie the social contract, and byasking whether the philosophical structures whichdefine the powers of the state and society over theindividual offer sufficient protection for individualrights in the face of genetic knowledge andcapabilities.

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The quality of future generationsThe second important distinction between geneticsand eugenics resides in the algorithms used tomeasure the quality of future generations. Classicaleugenics was concerned with a biometric analysis ofthe mean and variance of a population. In contrast,modern medical genetics is predicated upon a modelof allopathic therapeutics aimed at alleviating theafflictions of individuals. The essence of allopathicmedicine is that the individual is autonomous, ratherthan synonymous with his or her disease, and thattreatment is directed at eliminating disease andmaximizing the repertoire of individual opportunityand ability.

In a previous paper, I described how LionelPenrose, a physician and the fourth Galton Professorof Eugenics, abandoned eugenic doctrine, when herecognized the potential for treating mentalretardation caused by inherited diseases such asphenylketonuria (9). Penrose did not abandoneugenics because he considered concern with thecharacter of future generations to be unethical, butbecause it became apparent that it was moreefficacious to deal with the disabled as individualswith medical afflictions. The allopathic principle ofimproving the capabilities of individuals withafflictions replaced the eugenic goal of improvingsociety by eliminating members with lesser qualities(negative eugenics) or enhancing the numbers orcapabilities of the elite (positive eugenics).

In applying the paradigm of allopathic medicineto genetics, Penrose also implicitly assumed theethical precepts and precedents of western medicinein which the interests of individual longevity, well-being, and privacy take precedence over the interestsof society. Risk and benefit are defined withreference to individuals, their freedom of expression,and their free will. Are contemporary geneticpractices allopathic in nature? Are the guidelines ofallopathic practice useful instruments for preventingeugenic abuse?

Somatic gene therapy and screening of thenewborn for treatable inherited or congenital diseasesare classic applications of the allopathic model fortreating human disease. Other potential geneticpractices such as preconception, or population,screening for heterozygous carriers of mutations,prenatal diagnosis for untreatable diseases, or theuse of genetic technologies to enhance normalcapabilities, are not classically allopathic in nature.

The ordered principles of fairnessThe preceding sections have attempted to establishbasic principles which distinguish eugenics andmedical genetics. The question then is whetherformal philosophical, ethical, and legal principlescan constitutively discriminate between genetic andeugenic applications of modern technologies,enabling genetic applications to proceed without risk

of eugenic abuse. The preceding analysis suggeststhat the essence of this question relates to theperceived influence of individual liberties relative tothat of the society, as well as to the perceivedimportance of individual welfare relative to that ofthe population.

John Rawls's formulation of the relationshipbetween individual liberty and the social order in hisinfluential book, A Theory of J7ustice (10), providesone model for addressing this question in a formalmanner. Rawls's theory of 'justice as fairness' isbased upon reconsideration of a theoretical originalposition in which no social structures are presumedto exist among men. From this condition, Rawlsreconstructs how social structures could bevoluntarily created among individuals possessed ofrationality, reflective equilibrium, and free will. Thecritical postulates in Rawls's synthesis are: i) that inthe original condition all individuals are equal, or atleast enshrouded in a 'veil of ignorance' which makesindividuals unaware of their potential inequality, andii) that no one would consent to structureswhich compromise his/her personal prospects orprosperity. From these postulates, Rawls derives aset of ordered principles which can serve as a basisfor justice (10):

First principle: Each person is to have an equal rightto the most extensive total system of equal basicliberties compatible with a similar system of libertyfor all.Second principle: Social and economic inequalities areto be arranged so that they are both:

(a) to the greatest benefit of the least advantaged,consistent with the just savings principle, and(b) attached to office and positions open to allunder conditions of fair equality of opportunity.

First priority rule: The principles of justice are to beranked in lexical order and therefore liberty can berestricted only for the sake of liberty. There are twocases:

(a) a less extensive liberty must strengthen thetotal system of liberty shared by all, and(b) a less than equal liberty must be acceptable tothose citizens with the lesser liberty.

While Rawls's construction is explicitly designed toaddress social and economic justice, his formulationis applicable to the issues raised by modern genetics.The logic of Rawls's argument, the orderedprinciples of justice as fairness, and the terms of thecontract which Rawls constructs between man andsociety may be formally applied to genetics byadducing the initial conditions that all individualsare genetically equal, or at least ignorant of theirgenetic constitution and its consequences for theirprogeny. Following the essence of Rawls'sargument, it may be deduced that no individualwould accept genetic manipulations which alter thepostulate of genetic equality of the initial condition

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for fear that his/her own prospects could bediminished. Rawls himself suggests this line ofreasoning, writing:

'There is also, theoretically anyway, the question of areasonable genetic policy. In these cases too, in orderto carry through the idea of the original position, theparties must not know the contingencies that setthem in opposition. They must choose principles theconsequences of which they are prepared to live withwhatever generation they turn out to belong to' (11).

Applying the path of Rawls's logic to the problem ofgenetics, a set of ordered principles might be derivedwhich could guide the application of genetics inaccordance with the principles of fairness.Paraphrasing Rawls's ordered principles, geneticapplications should: i) affirm the priority of theindividual's right to extensive, equal basic libertiesover any application of genetic technologies [Firstprinciple]; ii) provide absolute benefit for the leastadvantaged [Second principle, a]; iii) make theopportunities and benefits which may accrue fromgenetic applications available without discrimination[Second principle, b]; iv) maximize the minimum levelof opportunity or potential shared by all (the socialminimum), rather than maximize the averageliberties [First priority rule, a]; and v) ensure thatgenetic inequalities and genetic interventions areacceptable to those with genetic disadvantages [Firstpriority rule, b]. Note that this construction addressesonly issues of social control and individual libertiesand is not dependent upon general theories of healthcare based on Rawls's philosophy (12).

Rawls's construction of a theory of justice is aparticularly appropriate model for considering theissues raised by genetics and eugenics becausehumankind is, in many respects, truly in an originalposition with respect to the formulation of socialstructures regarding genetics. We are, in fact,ignorant of our own genetic potential. Moreover,Rawls's formulation specifically addresses the twobasic issues which distinguish genetics and eugenicsby: i) defining the basis and limits of social controlover individual liberties, and ii) emphasizing theneed to focus on minimal individual welfare inassessing the ethics of societal actions. Theparaphrased principles of fairness explicitlyproscribe the practice of negative eugenics which isnot directed at furthering a 'system of equal basicliberties compatible with a similar system of libertyfor all', is not 'to the greatest benefit of the leastadvantaged', and is directed at strengthening astatistical measure of opportunity rather than theobjective opportunities (liberties) shared by all,specifically those with the least advantages.The application of these principles to positive

eugenics is more complicated, given the nature ofthe arguments which are often used to justify suchpositive eugenic practices. It might be argued that

positive eugenics could indirectly benefit those withthe least advantage, creating more opportunities andthus enhancing their freedoms, and that theprinciples of fairness would, therefore, not explicitlyproscribe positive eugenics. This line of reasoning iscentral to Rawls's broad theory of justice, in whichsocial and economic inequalities are justified by theirextended effects on the system of basic liberties and,specifically, by their ability to extend the liberties ofthose with the least advantages. Does such reasoningjustify positive eugenics?

Historical precedentsIn assessing the fairness of positive eugenic practices,it is necessary to ask whether it is reasonable toassume that genetic inequalities truly benefit thosewith the least advantage. Historical precedentssuggest that genetic inequalities rarely, if ever,benefit those who are disadvantaged. On thecontrary, it is common to make a distinctionbetween those whose evident disadvantages aregenetically determined and those whose dis-advantages are social or acquired (ie, nature versusnurture). The purpose of this distinction hashistorically been to delineate those who are simplysocially or economically disadvantaged, who maybenefit from social interventions such as education,welfare, or economic growth, from those who aregenetically disadvantaged, who may not warrant (ormay not benefit from) such interventions. It ishistorically common to predicate social and politicaldiscrimination against certain social or economicgroups on the basis of their presumed geneticdisadvantage. For example, the eugenic charac-terization of Jews, blacks, and indigenous peoples ofthe new worlds played an important role in justifyingracist policies within the philosophically liberalsocieties of Western Europe and America. In thiscontext, positive eugenic applications which increasethe real or apparent inequalities among individualswould be perceived as a real peril to those with theleast advantage.

It is also unclear how genetic inequalities, incontrast to social or economic inequalities, mightlead to tangible benefits for those who are geneticallydisadvantaged. Rawls justifies social and economicinequalities on the basis of the supposition thateconomic growth and social opportunities whichmay derive from the accumulation of wealth maysubsequently provide material benefit for those whoare disadvantaged. This benefit is accrued throughthe investment in social and economic structureswhich are themselves subject to the principles offairness. While it may be argued that social andeconomic benefit may accrue indirectly frompositive eugenics (this is the classic justification ofeugenics by Galton and his contemporaries), there islittle social or historical precedent for such beneficialeffects. It is also unclear whether social structures

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currently exist which may exploit such inequalitiesfor the benefit of the disadvantaged in the same waythat the generation of wealth is presumed to expandthe opportunities for the poor. Thus, it is unlikelythat such practices would meet the criteria offairness.

In the original condition, in which the postulate ofgenetic equality is essential, it can be surmised thatthe possibility of indirectly benefiting from positiveeugenics would be less compelling than the potentialfor introducing discrimination based on theimposition of genetic inequalities. On a theoreticalbasis, positive eugenic practices which introducedgenetic inequalities would, thus, be proscribed bythe ordered principles of fairness both because itwould not further an equal basic liberties and, giventhe lessons of history, would be unlikely to beacceptable to those with lesser liberties.

Practical applications of fairnessAre the ordered principles of fairness which Rawlsproposes useful for adjudicating specific applicationsof modern genetics? This question may be asked attwo levels. The first is whether Rawls's paraphrasedprinciples of fairness can be used to delineate geneticinterventions which are fair, from those which arepotentially eugenic in nature. This is the questionaddressed by the present work. The second levelconcerns the question of whether Rawls'sformulations can be used to measure the ethics,propriety, and social utility of specific geneticinterventions. This question is beyond the scope ofthis present work and will be addressed onlytangentially.

It is not difficult to apply Rawls's principles offairness to evaluating essentially allopathic practicesof medical genetics such as somatic gene therapy (9).Here the explicit intent of the genetic interventionsare to benefit those individuals who are leastadvantaged such as those with genetic diseases orhandicaps which might be rectified by geneticinterventions. Rawls's principles of fairness stipulatethat such applications be applied withoutdiscrimination, with equality of opportunity, andwith the acceptance of the subject. These con-clusions are not uniquely dependent upon Rawls'sprinciples of fairness. For example, the primaryimportance of distinguishing interventions whichaid those with handicaps, ensuring equal access togenetic therapy, and obtaining voluntary andinformed consent have been strongly affirmed byvarious ethicists, religious groups, and governmentpolicy committees in establishing regulations forsomatic gene therapy (13,14,15,16,17).The application of the principles of fairness to

analyze actions which would enhance normalcharacteristics (ie, by positive eugenics) is morecomplex. Why not use genetics to enhance the talentsof gifted athletes? Why not use genetic interventions

to improve intelligence or work performance? Whynot use genetic interventions to enhance the normallife-span? While some of these genetic applicationsare ostensibly benign, it is likely that none of theseapplications would satisfy the conditions of fairnessby providing absolute advantage and beingacceptable to those with the least advantage. Forexample, enhancing the athletic ability of athleteswould not be acceptable to their lesser opponents.Improving the intelligence or work performance ofsome individuals would not be acceptable to thosewho might compete for their jobs. Enhancing thenormal life-span would not be acceptable to youngerindividuals or future generations who would mostlikely suffer diminished opportunities. Each of thesemeasures would, in practice, further inequalities inopportunity without a tangible prospect of benefitingthose who remain at a disadvantage or furthering astate of equal basic liberties.The issue of using genetic engineering to facilitate

longevity illustrates how the principles of fairness canbe used to distinguish eugenic and non-eugenicapplications of similar technologies. While longevityhas been significantly increased in recent decades bythe pharmacological treatment of disease, byadequate nutrition, and by good sanitation, thesemeasures are not considered eugenic since they arespecifically designed for the benefit of individuals whoare afflicted by disease, poor nutrition, or poorhygiene. So too, the use of genetic technologies tominimize the morbidity of ageing, to treat or preventdisease, or protect individuals from environmental orwork-related toxins would provide absolute benefit ofthe least advantaged (ie, those at risk) and would beacceptable to those with disadvantage. Such practiceswould be entirely consistent with the principles offairness even if they coincidentally provided benefitsto those who were not disadvantaged.

In contrast, the use of genetic engineering toenhance longevity in normal individuals wouldcreate further constitutive inequalities within thepopulation, distancing those whose longevity wouldbe increased from those whose longevity was limitedby disease or other factors. Such applications wouldnot inherently further a system of equal basicliberties, would not objectively benefit those with theleast advantage or receive their acceptance, and thuswould be incompatible with the ordered principles offairness.The critical point is that the distinction between

eugenics and medical genetics does not relate to thenature of the technology which may be used toenhance longevity, but rather in the purpose forwhich such technologies are applied. Geneticengineering is not more inherently eugenic thanbirth control, sterilization, or family planning whichcan each be employed fairly in medical practice, butalso can be abused by society for eugenic purposes.

In applying the principles of fairness, one isformally making a distinction based on criteria

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which are similar to those used to distinguishgenetics and eugenics. Those genetic interventionswhich are socially imposed in the beneficent interestof future generations meet the definition of eugenicsand do not meet the standards of fairness. If thesame interventions were applied in a mannerconsistent with fairness, they would not be eugenicbecause they would be based on the assent ofindividuals rather than on imposed social controls,and because they would focus on the needs ofindividuals rather than the statistical quality of thepopulation.

It may be further generalized that the applicationof genetic technologies in the context of allopathicmedicine (ie, to treat an individual afflicted with anundesirable or disadvantageous condition), inaccordance with the ethical principles and preceptsof allopathic medicine which require voluntaryinformed consent, would be compatible withfairness and are therefore not eugenic in nature.Some genetic applications such as geneticcounselling, population screening, preconceptionscreening, prenatal diagnosis, or germline genetherapy, however, are not obviously allopathic andare ambiguous when analyzed with regard to theordered principles of fairness. The formal difficultyis that in order to apply the ordered principles offairness it is necessary to identify the individual whomay benefit from the genetic intervention (ie, in thecontext of fairness, the individual with lesser libertiesfor whom genetic intervention provides absoluteadvantage). Is genetic screening, for example, aimedat extending the liberties of a parent, an unbornchild, a sibling, other relatives, or prospectiveconceptions in the future?

Even without being able to provide a generalanswer to this question for each conceivable case, itmay be recognized that by applying the principles offairness, the analysis assumes a distinct focus. If anindividual can be identified who will benefit from theproposed genetic intervention in accordance withthe ordered principles of fairness and who willprovide assent, then that intervention is not eugenicin its application.

For the purposes of assessing whether or not anintervention is eugenic, it does not formally matterwho is ultimately considered to be the subject of thegenetic intervention. (The ethics of each action isobviously critically dependent upon the choices thatare made between individuals, though this is not thetopic of the present work). There are manyprecedents for this type of choice in medicine. Atransplant surgeon may remove organs from akidney donor to benefit a recipient, society mayincarcerate a child-abuser to protect a child, andcertain risks of genetic or infectious disease may beallowed to protect the privacy of a patient beingtreated for these conditions. In each of thesepractices, once the patient is identified, medicalpractice is governed by attention to the risks and

benefit to the patient as an individual and the abilityto obtain voluntary and informed consent from eachparticipant.

The fragility of fairness applied togeneticsRawls explicitly declines to consider eugenics in ATheory of J7ustice, yet his tangential consideration ofeugenics illustrates its eminent danger. Inconsidering eugenics Rawls digresses from hispresumption of social equality and postulates anessential genetic inequality, writing:

'... the distribution of natural assets is a fact ofnature and that no attempt is made to change it, oreven take it into account' (1 8).

and that:

'In the original position, then, parties want to insurefor their descendants the best genetic endowment'(19).

Based on these premises he derives principles whichappear to countenance both 'negative eugenics' and'positive eugenics':

'Thus over time a society is to take steps at least topreserve the general level of natural ability and toprevent the diffusion of serious defects' (20).

It is striking that, in considering eugenics, Rawlstemporarily denies one of the central tenets of hissynthesis. He contradicts his assertion that '... allparties in the original position are equal ...' (20) byassuming the genetic distribution of assets (ie,genetic inequality) is a 'fact of nature'. Rawls'sdeference to genetic inequality over the generalconcept of human equality (or at least a veil ofignorance) perhaps merely cedes the obvious; thatwhatever the limits of personal prescience, mostpeople remain confident that they can gauge theirown genetic constitution relative to that ofothers.

Perhaps there is a practical limit to the theoreticalpresumption of equality or ignorance which istranscended in considering one's own genes. Thesense that there is a pragmatic limit to ouracceptance of genetic equality is central to our fear ofeugenics. This sense is reinforced by centuries ofhistory littered with ethnocentricity, racism,nationalism, anti-semitism, slavery and genocideand the justification of such practices based on thepresumption of genetic inequality. It is threatened byevolutionary theories which posit that evolution isdriven by the dissemination of 'superior' genesthrough populations or that the nature of the self andsociety can be shaped by selection among unequallyfit genetic determinants (21).

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It is not necessary, however, to rewrite history orreject modem evolutionary theory to resurrectfairness as a basis for genetic ethics. It is not evennecessary to accept the counterintuitive contingencythat individuals are in any real sense geneticallyequal. Certainly there are genetic differencesbetween different individuals, different races, andeven different ethnic groups. Certainly manyindividuals are genetically disadvantaged. Yetmolecular genetic analysis illustrates that thesegenetic differences are superficial, and that we aremore equal than supposed by appearance (22). Weare, in fact, almost completely ignorant of ourgenetic constitutions and our fate. Every individualcarries dozens of potentially lethal mutations andhundreds of genes which may contribute tomalformation or disease. Some of these mutationscause disease during embryonic development,childhood, or adulthood; some are associated withdisorders of reproduction, senescence or cancer;some will affect only our progeny and kin. Thoseindividuals who suffer from genetic disease do notnecessarily have more mutant genes than those whoare apparently normal. For example, a child withcystic fibrosis does not have more mutant genes thana child who is unaffected; rather, in the affectedchild, two of the dozens of potentially lethalmutations happen to fall within the cystic fibrosislocus, while in an unaffected child, mutations maybe found scattered elsewhere in the genome.Moreover, with every conception, our offspring areat risk for novel chromosomal abnormalities such asDown's syndrome or spontaneous mutations whichare the most common cause of diseases such asmuscular dystrophy, Lesch Nyhan disease, and mostsevere autosomal dominant diseases. Others carry'pre-mutations' in the form of unstable repetitivesequences that are prone to disease-causingmutation.One of the most important discoveries of genetic

research is the recognition that each individualcarries uncountable novel genetic excursions whichconstitute the rich potential of human variability. Itis estimated that up to one per cent of all bases in thehuman genome are variable among differentindividuals. A small subset of these variations causerecognizable diseases such as cystic fibrosis,phenylketonuria, muscular dystrophy, or haemo-philia. There are currently 3,000-10,000 knowndisorders which are due to specific genetic variationswithin the human genome (23). It is known,however, that there are over 30,000,000 othervariations which occur within the human genome,most of which cannot be conveniently categorized asnormal or abnormal. For example, we have learnedthat even mutations which cause recognizablediseases such as sickle cell anaemia, phenyl-ketonuria, or cystic fibrosis can confer anevolutionary advantage on their carriers in otherclimates and social conditions. The sickle cell

gene may provide protection against malaria,phenylketonuria may not be a disease in societieswhich have limited protein intake, and the commoncystic fibrosis mutation encodes a protein which mayfunction at low temperatures. In contrast, certaingenetic variations which are considered benignor even beneficial today could be recognized aspathogenic under different environmental orcultural conditions in the future.The crucial point is that we do not know, and

indeed cannot know, the quality or value of theremarkable variability within the human genome.That is not to say that we cannot recognize diseasesand disadvantage caused by genetic mutation; onlythat we cannot rationally surmise that our geneticendowments are inherently unequal (22). We do notknow the long-term significance of our own geneticendowment, and we cannot know whether geneticdiagnosis, genetic screening, or genetic therapy willultimately improve or impair our own position orthat of our progeny. Thus, it seems reasonable toinvoke the verity of a 'veil of ignorance' with respectto genetics, and, in the original condition accept thepresumption of equality in the absence of anyobjective evidence to the contrary. We can only hopethat we are, in fact, equal and equally fit for thefuture. We must retain the presumption of equalityas an initial condition in considering the ethics ofgenetic technologies. It should be emphasized thatthis presumption of equality, not the demonstrationof true equality (which may be doubted by many), issufficient to satisfy Rawls's definition of the originalcondition and apply the principles of fairness toproscribing eugenic practices.

Conclusion

This analysis demonstrates that genetics andeugenics can be formally distinguished by theircontrasting assumptions concerning the relationshipbetween the individual and society, and suggests thata social contract can be adequately formulated toproject these distinctions into practical ethical andlegal principles. This analysis also illustrates thefragile nature of this synthesis and how eugenics maybe countenanced by subtle changes in essentialpostulates.The fair and ethical application of genetics is

critically dependent upon assumptions concerningthe extent of essential individual rights and essentialhuman equality. The doctrines of many nationalist,ethnic, and religious movements; many conservativeconstructions of social philosophy; the immortalpresumptions of many mortal men; and even theestimable goals of medical diagnosis, education, andtherapy often appear to trespass down the 'slipperyslope' towards eugenics. The fence that separates thepath of medical genetics from this 'slippery slope' isour willingness to accept the postulate of essential

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164 Distinguishing genetics and eugenics on the basis offairness

genetic equality and priority of individual freedoms.If there is any compromise of individual rightsrelative to those of society, if there is any willingnessto consider the quality of future generations inaggregate rather than as the minimal shared level ofindividual well-being, or if any presumption ofgenetic inequality is not vigorously disallowed, thenit is not difficult to rationalize eugenic programmes.If, however, genetic applications focus resolutely onpreserving or extending explicit individual libertieswith the assent of the individuals concerned, theneugenic abuse is impossible.To avoid even accidental usurpation of genetic

technologies for eugenic purposes, each applicationof genetics to medicine must clearly identify anindividual (whether it is an adult, a child, or parent)whose affliction is the target of therapy, specificindividual liberties which are reinforced by eachgenetic intervention, and evidence that the assent ofthe individual has been obtained. Genetic diagnosis,patient education and medical records must becarefully formulated so that those who have theopportunity to peer beyond the veil of ignoranceappreciate the critical postulate of human equality.This must be done carefully to protect both ourpatients and their progeny.

AcknowledgementI would like to thank Drs L S Rothenberg, BaruchBrody, and Andrew Lustig for their comments onthis work as well as the anonymous referees of thisjournal for their thoughtful critique.

Fred D Ledley, MD, is an Associate Professor of CellBiology and Pediatrics at the Baylor College ofMedicineas well as a founder and Vice President, Clinical andRegulatory, GENEMEDICINE, INC. He received a BSdegree from the University of Maryland (1974), anMD from Georgetown University (1978), trained inPediatrics at the Harvard Medical School and BostonChildren's Hospital (1978-1981), and trained inmolecular biology at the Massachusetts Institute ofTechnology with Dr David Baltimore (1981-1983).Dr Ledley was principal investigator of the first

approved clinical trial for somatic gene transfer into theliver of human subjects. He is the author of over 150papers or chapters related to various aspects of themolecular biology of human disease, somatic genetherapy, and clinical application ofgenetic engineering to

man. He is cochairman of the Houston Study Group onGenetics, Religion, and Ethics at the Institute ofReligionof the Texas Medical Center.

Address for readers' correspondence: Fred D Ledley,MD, Associate Professor, Departments of Cell Biologyand Pediatrics, Baylor College ofMedicine, One BaylorPlaza, Houston TX 77030, USA.

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