Medicine, Health Care and Philosophy 4: 305–309, 2001.© 2001 Kluwer Academic Publishers. Printed in the Netherlands.

Scientific Contribution

Ethical boundary work: Geneticization, philosophy and the social sciences

Adam M. HedgecoeDepartment of Science and Technology Studies, University College London, Gower Street, London WC1E 6BT, UK(Phone: 020 7679 2959; Fax: 020 7916 2425; E-mail: a.hedgecoe@ucl.ac.uk; http://www.ucl.ac.uk/sts/)

Abstract. This paper is a response to Henk ten Have’s “Genetics and Culture: The Geneticization thesis”. In it, Irefute Ten Have’s suggestion that geneticization is not the sort of process that can be measured and commented onin terms of empirical evidence, even if he is correct in suggesting that it should be seen as part of ‘philosophicaldiscourse’. At the end, I relate this discussion to broader debates within bioethics between the social science andphilosophy, and suggest the need for philosophical approaches to take the social sciences seriously.

Key words: empirical research, geneticization, genetics, social sciences

Introduction

I would like to thank Henk ten Have for the oppor-tunity to reply to his article “Genetics and culture:The geneticization thesis” (Ten Have, 2001), which isitself, in part, a response to my own article “Geneti-cization, medicalisation and polemics” (Hedgecoe,1998). This dialogue is important, not just because thetopic of geneticization is central to how society dealswith the new genetics, but also because the contrastsin approach between Professor Ten Have and myselfhighlight important differences in the question of howbioethics as a research enterprise should be carriedout.

In this response, I outline Ten Have’s positionregarding the geneticization thesis and follow this withmy own views on how the topic of geneticizationshould be investigated. Finally, I relate this discussionto broader issues in the bioethics literature, concerningthe relationship between philosophy and the socialsciences. There is much in Ten Have’s article, hisanalysis of non-directiveness in genetic counselling forexample, that I agree with however, and I will limitmyself to discussing those points that distinguish ourpositions.

The geneticization thesis

The core of Ten Have’s argument is that critics of thegeneticization thesis are mistaken about what kind ofthing this concept is:

geneticization is not a new empirical phenomenonbut a new theoretical concept that uncloses partic-

ular dimensions and brings in new perspectivesin the debate on present-day genetics (Ten Have,2001).

The geneticization thesis cannot “be falsified on thebasis of empirical evidence” since it is “a philo-sophical interpretation of the self-understanding oftoday’s human life and culture” (Ten Have, 2001). Hesuggests that attempts to assess geneticization in termsof empirical evidence fall into the trap of applying thementality of the natural sciences (which are part of theproblem) to a concept developed in the “humanities,cultural sciences and philosophy”.

But at the same time Ten Have wants the geneti-cization thesis to tell us something about the realworld; it “is not . . . [an] . . . ideal construct; it is aboutempirical reality” (Ten Have, 2001). The geneticiza-tion thesis therefore has to maintain a balancing act: itcannot be judged in terms of empirical evidence, yetat the same time it tells us something about empiricalreality. What the concept of geneticization apparentlydoes is refocus our attention, away from personalethical topics such as the management and accessof genetic information, and towards broader societalissues such as the effect of genetic technologies onour culture and self-perceptions. It ‘snaps’ us out ofassumptions such as the only real problem with genetictechnology being how you apply it.

The empirical critique

My own critique of the concept of geneticization (ascurrently conceived) is intended to produce a defini-

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tion of this process which can be used for researchand which tells us something about the ethical implica-tions of genetic technologies. I do not wish to abandonthe concept of geneticization, I merely wish to see itrevised in a productive way. Ten Have takes excep-tion to my use of empirical research, carried out byCeleste Condit, which showed two things: the firststudy suggests that claims that the blueprint metaphorencourages reductionistic and discriminatory thinkingin the public mind are at best simplistic and at worstmisguided (Condit, 1999b). The second proposes thatone of the tenets of the geneticization thesis, thatmodern media representations are more deterministicand geneticized than those in previous eras, is incorrect(Condit, Ofulue and Sheedy, 1998). In many ways,modern public discussions about genetics are moresophisticated and less deterministic than those whichhave gone before.1

The role of empirical evidence

If Ten Have is right, then these studies have missed thepoint since geneticization is not the kind of thing youcan judge in empirical terms. The obvious response tothis is, if this is the case, why do authors writing aboutthe geneticization thesis make so many empirical state-ments – by which I mean claims about empirical realitywhich can be judged on the basis of evidence? Thereare two points to note here: the first is that ‘evidence’ inno way implies ‘numbers’. It so happens that both thestudies I quoted in my 1998 article used quantitativedata, but that is a result of the questions asked ratherthan a requirement of the methodology used to critiquethe geneticization thesis. In my own research, I relyalmost exclusively on qualitative data.

The second point is that Ten Have seems to assumethat if you require empirical proof, then you must beoperating from within the framework of the naturalsciences. This is plainly mistaken, as any historian orarchaeologist could tell you. If a claim is made in,for example, history, then the historian is expectedto back it up with evidence. If the claim concernsthe economy of Roman Britain, then the evidencewill quite probably involve numbers. This does notmean that the historian has succumbed to the naturalsciences. Ironically Ten Have implicitly accepts thathistorians require evidence when he defends MichelFoucault’s work against medical historians who claimthat his works “do not take into account many relevantdata from the history of medicine” (Ten Have, 2001).Foucault’s work is apparently immune from the usualempirical requirements of history since he operates atthe level of philosophical discourse.

Yet as I have already suggested, if the geneti-cization thesis cannot be “tested with the instruments

and methods from the empirical sciences” (ibid.) itsdefenders make a surprisingly large number of empir-ical claims. For example, Ten Have states that therepresentation of genetics in the media “creates . . .

the impression that knowledge about many individualgenes is knowledge about how the genome functionsin people” (Ten Have, 2001). In whom is this impres-sion created? If it is just in Ten Have himself, then thisis interesting but limited. If he means in the public atlarge, then this is important, but it is also an empiricalclaim, for which no evidence is offered. It seems aform of special pleading to insist that the geneticiza-tion thesis is a philosophical discourse, but that it alsoproposes empirical points which are somehow immunefrom empirical scrutiny.

This is not to say that the proponents of the geneti-cization thesis do not offer evidence for their claims.Ten Have cites Nelkin and Lindee (1995) and theirstudy of the cultural representations of the gene. Inmy opinion, they do indeed show that “the gene isa very powerful image” (Ten Have, 2001). Where Idiffer is in the suggestion that these same authors showthat the gene has had a “growing impact” on popularculture (ibid.) to the extent that “the gene has beentransformed . . . it has become the key to human rela-tionships . . . it has become the essence of identity andthe source of social difference” (Nelkin and Lindee,1995, p. 198). Nelkin and Lindee cannot show this,since they offer no alternative vision of human rela-tionships, identity and social difference to compare thegenetic version with. They do not carry out a similaranalysis of the icons in popular culture from twentyyears ago, to contrast with their modern results. Theyhave no grounds for claiming that genetic explanationsare more popular now, since they do not show howpopular they were in the past.

This problem concerning the growth of geneticiza-tion is also present in Abby Lippman’s work. Howeverconvincing her analysis of the threats and influencesof genetic technology, Lippman insists that this is aproblem that is getting worse: geneticization is “anongoing process . . .” (Lippman, 1991, p. 19), or an“ever growing tendency” (Lippman, 1998, p. 64).Whatever geneticization is, according to her there ismore of it about now than there has been. And sincegeneticization is about definitions, medical interven-tions and priorities, its putative increase is all aroundus, and should be noticeable by us. If geneticizationis a philosophical thesis, why does it make so manyclaims about empirical reality?

Geneticization as a research tool

I believe that Ten Have is mistaken about what kind ofthing the current concept of geneticization is. Rather

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than it being a philosophical thesis, I think it is betterseen as an activist’s rallying cry, a way of raisingpublic and political consciousness about the possibledrawbacks of genetic technologies and information.Lippman explicitly calls her 1998 article on geneti-cization “The Politics of Health”, and I suggest thatshe is less concerned with geneticization’s ontologicalstatus as part of a philosophical discourse than with theimpact it has on making people aware of problems thatneed to be faced. But this is not that same thing as TenHave’s concept, introduced into “scholarly debate”as a product of the humanities, cultural sciences andphilosophy. As a means of examining the ethical issuesin genetics, the current geneticization thesis is flaweddue to its ‘moral circularity’. By definition, geneticiza-tion is morally unwelcome; Lippman refers to it as aprocess of colonisation, for example (Lippman, 1994,p. 14). Certain authors (for example Hoedemakers andTen Have, 1998; or Simpson and Sherwin, 1999) havethen used geneticization to analyse the ethical implica-tions of genetic testing, reaching the conclusion thatthis kind of intervention is morally wrong. This isunsurprising, since if you start from a position wheregenetic technologies are bad, then any assessment ofthose technologies is likely to conclude that they areindeed bad (See Hedgecoe, 1999 for fuller discus-sion). This is part of the problem Ten Have admits,that the current concept of geneticization is ambiguousand “There is a definite need of conceptual clarifica-tion” (Ten Have, 2001). In my own Ph.D. research,focused on geneticization in medicine, I have used a‘stripped down’ definition which states that ’geneti-cization takes place when an explicit link is madebetween a condition and a stretch of DNA’. This main-tains much of what Lippman is interested in (e.g. therole of genetic explanations for disease) without indu-cing the kind of circularity which results from defini-tions which explicitly claim geneticization is ethicallyunwelcome.

Philosophy and the social sciences

It is telling that when Ten Have objects to the use ofempirical evidence to assess the geneticization thesis,it is only evidence from the social sciences that heis talking about. Researchers in the field of geneti-cization are quite happy to accept empirical resultsfrom the natural sciences, even genetics, if it supportsthe idea that current debates about disease are toosimplistic. Lippman asks “what if biologic realityis discordant with the hyperbole in professional andpopular magazines and isolated genes are not causes?”(Lippman, 1992, p. 1470). The geneticization thesis isnot anti-science, it is just saying that the current stories

told by certain scientists are too limited and that weneed to look at a more complex picture, where genesare only part of the story. Evidence for this complexitycan be gathered from the natural sciences.

The rejection of empirical evidence from the socialsciences is more to do with tensions between philo-sophical and sociological approaches to bioethics,than with a rejection of empirical evidence. TenHave is engaged in what sociologists of scienceterm ‘boundary work’. This is when scientists erectrhetorical boundaries between science and society todemarcate their own areas of expertise and limit theinterventions of those not deemed sufficiently knowl-edgeable. Similar work takes place between ‘proper’science and ‘pseudo-sciences’ (Gieryn, 1995). TenHave’s boundary work restricts and limits the kinds ofapproaches one can take in analysing geneticization,privileging philosophy and excluding research fromwithin the social sciences. Such a strategy makes sensein the light of what has been termed the social sciencecritique of bioethics (Callahan, 1999).

At one end of the spectrum are critics like BarryHoffmaster who attacks theory-heavy medical ethics(what he calls the applied ethics model) and claimsthat:

It is time to admit the terminal condition of ‘appliedethics’ . . . as long as medical ethics remains ‘theorycentred’, philosophers working in the field willcontinue to do what the Chinese, in a marvelouslyapt phrase, call ‘playing with emptiness’ (Hoff-master, 1992, p. 1429).

At the other end are those like Daniel Callahan, co-founder of the Hastings Center, who – although stillworking on philosophical bioethics – is:

amenable to ways of thinking about bioethics drawnfrom richer veins than provided by . . . analyticphilosophy . . . The social sciences surely offerknowledge pertinent to ethics (Callahan, 1999,p. 285).

Positioned somewhere in the middle are a numberof authors who feel that it is time to reconsider therelationship between traditional philosophical ethicsand social science approaches, such as sociology andethnography (DeVries and Conrad, 1998; Kleinman,1999; Hope, 1999; Nelson, 2000; Zussman, 2000). Myown position has much in common with these centristauthors. If bioethics is to deal with the issues thatwill result from the completion of the human genomeproject, philosophers need to accept that the socialsciences can play a vital role in assessing the ethicaland societal impact of science. This means bioethicshas to find a way of incorporating empirical evidence

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into its considerations, instead of regarding it as threat.At the same time, it is plainly nonsense to suggest thatphilosophical bioethics is exhausted and should playno role in the debates to come (see Zussman, 2000 fora critique of Hoffmaster’s extreme position).

Exactly how the social sciences and philosophyshould combine to form a ‘new bioethics’ is muchharder to see. Clearly, the ‘linear model’ that currentlyoperates does a disservice to both disciplines:

The common picture of the relationship betweenbioethics and the social sciences assigns responsi-bility for accurately gathering the pertinent facts toepidemiologists, sociologists, anthropologists andtheir kin, and for assessing those facts to bioethicistswielding explicitly normative techniques (Nelson,2000, p. 13).

This picture, where the social sciences act as hand-maiden to bioethics, ignores the value-laden natureof data gathering, and runs the risk of underminingnormative decisions based on such evidence. Nelsonsuggests that the bioethicist should embrace thisknowledge as a source of normative information toexpand his or here own analysis. Other suggestions fora more pro-active role for the social sciences include:testing bioethicists’ consequentialist claims (Zussman,2000); encouraging a more reflexive attitude towardsresearchers’ own values, and analysing the range andvariety of alternative normative positions (Kleinman,1999). This is only a beginning and it is likely to besome time before the social sciences have a significantimpact on the way bioethics is done – and visa versa.But a crucial element in this programme is the accept-ance on the part of philosophical bioethics that it needsto acknowledge the validity of empirical evidence fromthe social sciences, and change its discourse in thelight of this evidence. The boundaries are high but itis time they were breached.

Geneticization and the new bioethics

Although I suspect it is unintentional, Ten Havehimself shows how we could begin to imagine a ‘newbioethics’ in geneticization. He suggests that geneti-cization can be studied on at least four different levels:conceptually, institutionally, culturally and philosoph-ically (Ten Have, 2001). This latter area is obviouslythe preserve of the philosopher, but at all the otherlevels, philosophers and social scientists can learnfrom each other and work together. For example thefirst level, the conceptual, would include investiga-tion of the classification of diseases as genetic. Thephilosophy of medicine has a long history of researchinto classification (Hesslow, 1984), but there are also

excellent works in the social sciences on the sametopic which add a dimension normally overlookedin the philosophical literature (e.g. Bowker and Star,1999). Social scientists have specialised in exploringthe issues raised by institutions such as laboratories(Latour and Woolgar, 1986; Rabinow, 1996). Tosuggest that this work would not be relevant to a philo-sophical discussion of the institutions which supportgeneticization because it offers empirical evidenceabout how institutions work, seems to be cutting offone’s nose to spite one’s face. Finally, at the culturallevel, there is an entire discipline – anthropology –dedicated to the empirical investigation of cultures.In terms of genetics, research has already begun, forexample by looking at differences in attitudes towardsprenatal diagnosis and amniocentesis between cultures(Rapp, 1993, 1998). Within the social sciences, thereare huge resource available to philosophers interestedin exploring the process of geneticization, resourcesthat will allow them to test their concepts and predic-tions about how this process occurs, but also to revisetheir assumptions in the light of empirical evidence.

Acknowledgements

The research for this paper was supported by theESRC. I thank Jon Turney, Brian Balmer, John Wallerand Mairi Levitt for comments on an earlier draft.

Note

1. These citations are of the final, published versions ofCondit’s draft papers I cited in my original article. A book-length version of all this research can be found in Condit(1999a), which combines both qualitative and quantitativeanalysis.

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