From Secrets of Life to the Life of Secrets: Tracing Genetic Knowledge as Genealogical Ethics in Biomedical Britain
School of Advanced Study, University of London, 28 Russell Square, London WC1B 5DS. Monica.Konrad@sas.ac.uk
I argue that the facts of a ‘genealogical ethics’ are built up over time as local moralities of information disclosure and non-disclosure. In the context of predictive genetic testing technologies, family members must discriminate between genetic information that they think is ‘good’ to know or make known, and knowledge that they think is ‘bad’ to tell and share with others. But attempts to deal with the kinship implications of genetic foreknowledge frequently entail unresolved processes of moral decision-making, both within and across the generations. Seen as embodied experiences of moral reckoning, these genealogical knowledge dilemmas also implicate a myriad of interests and divergent claims beyond the life of any one person. This article considers why a specifically anthropological formulation of ‘genealogical ethics’ challenges the conceptual premiss of individual autonomy underpinning the ‘right to know’ debates of mainstream Western bioethics.
The burdens of genealogy: from where does talk about the medicalization of kinship come?
It is widely said by both popular and scholarly commentators that the substance of DNA reveals the ‘secret of life’: indeed, this has become a ubiquitous cliché in contemporary Western scientific discourse. Where once it was possible to find linkages between secrets of life and secrets of death in the intertwined strands of the double helix and the nuclear fall-out of the A-bomb (Keller 1992: 40), today the same dialectic of secrecy shapes cultural ideas about the social value of genes, genomes, and technoscientific futures. If, however, the spectre of human reproductive cloning meets its apotheosis in popular concerns over biological terrorism and germ warfare destruction, then, by the same token, it is now much harder to determine where for one person life may be said to begin, and for another death happens to take over. Focusing less on dystopian images than on certain lived realities, this article delimits an altogether different trajectory of ‘bio-secrecy’: one that is grounded in some of the everyday knowledge dilemmas that people in contemporary Britain have already experienced in relation to changing conceptions of their genes, bodies, and persons. At the same time, it seeks to identify and challenge some anachronistic survivals of older anthropological ideas and associations. What I have in mind here is the tradition of objectifying genealogical knowledge in terms of the ‘scientific’ propagation of tree-imagery (see Bouquet's critique 1993). Let me begin by bringing together one received claim which still enjoys widespread legitimacy amongst genetic scientists and a series of critical counter-claims from the social sciences.
The received claim would begin with the conventional narration of one particular scientific ‘discovery’ in 1953 in Cambridge, UK. Envisioned as the base pairing of the double helix, and passed on to us through James Watson's and Francis Crick's identification of the mechanism of genetic replication, the genetic code is said to hold nature's revelatory logos and more. We have before us, ostensibly, the simple mechanics of a self-replicating molecule, of ‘Life Itself’.1 The counter-claim refuses to reproduce these abstractions. Why should the rhetorical power of such secrets appear to carry almost universal biological and social resonance stabilizing the construct of ‘man’ across cultures and time, as though all human beings ultimately begin and end their lives in similar ways? How could scientists once have believed that it is by the governance of the pre-programmatic code that human form silently takes shape, bringing persons to life as degrees of sentience or, as nineteenth-century social evolutionists once reckoned, as the varying degrees of civilized virtue?
Recently, cultural historians and feminist biologists have argued that objectivist viewpoints about life and the abstraction of life's secrets were facts that came to be naturalized within singularly Westernized representations of heredity (Doyle 1997; Kay 2000). In the mid-twentieth century, life as a sequence of secret nucleotide chains was a story that was being written by a number of mainly American and British male research biologists. According to these laboratory-based scientists, secrets inhered within a mute and authorless form of ‘genomic textuality’ (Kay 2000: 331), a textuality that both challenged and augmented previous scriptural representations. Kay's critical historiography shows how certain informational idioms came to be imported into Cold War biology from the post-war obsession with cryptanalysis, cybernetics, electronic computers, and simulation technologies. ‘Hereditary material’, she comments, ‘became informational, and the informational representations of the code were literally materialised’ (2000: 7).
For the interested anthropologist, this Euro-American play on the transmission of ‘scientific’ knowledge as sources of ‘secret’ power looks like a near-perfect reproduction of any one of a number of locally conceived non-Western ‘origin myths’. One might easily look outside Britain for indigenous stories about the stealth and multiple conversion of particular body parts or other organic matter between the sexes or across the generations. What Westerners might then recognize today as their own folk belief in a natural science, engendered as knowledge about the ‘book of life’, belies what a critical anthropological account might otherwise see as the material underside of these muted secrets, their own hidden genealogy, as it were.2
Lippman (1993) and others employ the term ‘geneticization’ for the biological essentialism that so often tends to dominate our physiologies of meaning. Of course, this essentialism embodies only part of what we might call the conception story of Western genetics and biological knowledge production. The other key part of this story is the idea that the work of decoding, mapping, and sequencing genes is an unravelling of certain ‘secrets of life’ as lived narrative and embodied genealogy. It is not just that the mid-century discovery of the molecular mechanics of DNA was allied to a scientific method for decoding and ‘undoing’ Nature's secrets. Keller's feminist critique, Secrets of life, secrets of death, correctly locates such processes of biological knowledge creation within the larger dramatic ‘plot’ of scientific enlightenment; a plot whose episodes have characteristically enacted a clash of forces between light and dark, the visible and invisible, the rational and irrational. In this regard, the much-celebrated rise of molecular biology and its professional institutionalization in the 1950s comprises one of a number of ‘drama[s] in need of constant reenactment at ever-receding recesses of nature's secrets’ (Keller 1992: 41). Today's mass popularization of science, however, plots out a rather different dramatic agenda. Secrets and their affiliation to certain life forms have bred something of a stale conformity: this is the predictable knowledge that such secrecy is itself highly marketable.3 But where, amidst the commodification of such newly revealed ‘secrets of life’, has all the power that is the catharsis of human drama gone?
My aim then is to consider how those who have engaged with the new reproductive and genetic technologies evade, defer, and struggle to make sense of what they themselves classify as difficult conception knowledge. Debates about the generation and sharing of particular conception secrets between kin are analysed in terms of a wider relational rubric of personhood. I see these disclosure practices as the corner-stone of a ‘genealogical ethics’. Running in parallel with this is an account of the ways in which the discipline of social anthropology is beginning to rethink its own relation to genealogical knowledge as an evolving form of post-genealogical thinking. If genealogical reconstruction work is informed by contemporary developments in medical science, then, equally, new forms of kinship thinking and theorizing may assist the practical work of infertility experts, genetic counsellors, and other health professionals. I do need to offer certain caveats, however. Although such dialogues may often prove fruitful, they can give rise to profound misunderstandings and a wide range of false interdisciplinary cross-talk. This carries its own hazards and burdens – both at the practical and the theoretical levels.
Schneider's point, for instance, about the ‘genealogical unity of mankind’ and the problem of privileging systems of consanguinity as genealogical communities of blood relations – denoting ‘real’ as opposed to ‘fictive’ kinship – derived not only from a particular ethnoepistemology of European culture (Schneider 1984: 165-77), but rested ultimately upon a critique of scientific rationalism. Scientists and others who today make claims about the universal significance of the Human Genome Project could likewise be said to invite a critical anthropological response. The act of making known new genetic knowledge calls for reflection about the molecular construction of mankind as a genomically ‘domesticated’ species. The kinship implications of these revelations in turn requires reconsideration of the conceptual underpinnings of such terms as ‘biology’ and ‘genealogy’.
It is therefore of considerable anthropological interest that in applied technogenesis contexts, Euro-American concepts of heredity are reliably evoked by medical practitioners with reference to the bio-genetic qualities of given kin groups. It might be tempting to see this as an example of the ‘chaos’ of the relation – of the capacity of the ‘relation’ to outwit itself as a continuously self-organizing trope (Strathern 2000: 15). Yet one might also raise the question of conceptual connections in a more prosaic fashion by pointing to the moral ambiguities involved in the fact that kin are now required to avail themselves of opportunities to find out about any genetic disorders they may be carrying, and are thus implicitly held accountable for failure to seek and pass on this knowledge. For it is the case at least potentially, though increasingly something of a fait accompli in clinical genetics, that whole families can be classified, and individual kin members can variously identify themselves as ‘predisposed’ persons, according to the genes they now are invited (by medical technology) to know that they share. For instance, the identification of genetic inheritance through the clinical studies of ‘linkage analysis’ directs kin actively to filter relatedness through information gleaned from knowledge of a common genealogical past. This is usually information combined from multiple sources. There is the awareness by kinsfolk of their position in a given matrix of relations. There is also the existence of the confidential medical record, as well as the knowledge that patients and practitioner jointly assemble during genetic counselling sessions as the medical pedigree or so-called ‘genogram’.4
Researching North American adoptees and families predisposed to breast and/or ovarian cancer, Finkler (2000) notes how such a medicalization of kinship depends upon a particular way of thinking that she calls ‘genetic inheritance ideology’. In working out their medical histories through the reconstruction of genealogical relatedness, people appear to activate certain linkages, including connections with ‘true’ biological ancestors, through the temporality of DNA substance: ‘The DNA’, she notes, ‘binds a person's past and future into a single family narrative’ (Finkler 2000: 10). This operationalizes ‘informational heredity’ in a manner that is very different from the Cold War interests in cryptanalysis noted above. Like other contemporary kinship commentators who are engaged in explorations of the dynamic intersections of ‘cultures of relatedness’ (Carsten 2000; Franklin & Ragoné 1998), Finkler remains unconvinced by a biological model of bio-genetic substance presented in its simple unreconstructed capacity as (Schneiderian) cultural symbol. I would add that the brute reality of physical disease and suffering is, after all, the raison d’être not just for technical medical science talk about ‘chromosomal meiosis’, for example, but for certain relational realignments of persons that the complexities of indigenous kinship talk also make quite manifest.5 Further, the promise of future curative genetic therapies makes scientific genetics the basis for cultivating another tissue of social connectivity: kin are having to negotiate, as part of a moral and social anatomy of interdependence, the degree to which they want to know about others’– and, by implication, their own – genetic heredity. We might see such moral and affective anatomies as new relational ‘webs’ of kinship and relatedness, adding the proviso that these webs rework older anthropologically inflected meanings of ‘genealogy’, and structural-functional concepts of genealogical ‘proximity’ and ‘distance’, in quite different ways.
To consider how the medicalization of kinship is reappropriated in folk terms as a genealogical ethics, I draw upon aspects of my field research with two separate populations. The first is a study of in vitro fertilization (IVF) by anonymous ova donation conducted in the early 1990s at fertility clinics in the London area and involving in-depth interviews with 20 donors and 20 recipients. The second project is an ethnographic study of the making of the ‘pre-symptomatic person’ in the context of predictive genetic testing technologies. The participants in this second research study (46 participants from 22 separate families) came from all over the UK but were united in one key aspect: all had, or were related to persons affected by, a genetic predisposition to Huntington's Disease (HD). Huntingtion's Disease is a rare inherited (autosomal dominant) neuro-degenerative condition that usually develops in the mid-life years and for which there is currently no available cure.6 It is also one of the first hereditary illnesses for which genetic testing became available.7 Both projects involved intensive home-based fieldwork with affected family members and relevant patient-focused regional self-help and activist groups, as well as ongoing contact with various health professionals.
The following ethnographic vignettes establish certain parallels between these two research populations. Such parallels may be identified by comparing certain crosscutting flows of non-knowledge and knowledge so as to trace the creation of cultural value as practices of disclosure and exchange. Tracing conception secrets narratively as ethnographic knowledge enables others (as persons otherwise precluded from kinship testimony) to see how genetic knowledge and non-knowledge both establish and sever relational persons as specific and diffuse kinds of spatio-temporalized corporeal exchange. I suggest that it is amidst such knowledge flows that the moral life of secrets assumes cultural value and meaning as a genealogical ethics.
Tracing the life of secrets: anonymous ova donation and Una's burdens
By the time I first met Una Roy in 1993, she had given birth to her IVF-conceived daughter, Jodie, who was then just a few years old.8 Jodie was conceived after Una and Bill's second attempt by anonymous ova donation. White middle-class professionals, the couple had met and married in their early 40s. They had decided that IVF treatment by donor would be the best way to ‘try’ for a child, because Una had experienced an early menopause in her 30s. After tests and numerous consultations had been conducted at various hospitals, it had taken Una and Bill some seven years to become parents. These days, Una talks about how relatively ‘lucky’ she is that the transferred embryo survived to implant itself within the lining of her womb after only two ‘fresh’9 IVF attempts. She makes frequent references to popular culture, books she has read, and her working life as a teacher at a mixed-sex state school in the northeast of England, drawing particularly on her experiences of working with young disturbed children.
In the following vignette on knowledge and knowledge concealment, she links these experiences to her reading of the Freudian psychoanalyst and Nazi concentration camp survivor, Bruno Bettelheim, as we find ourselves talking around a problem she has identified as an ongoing kinship dilemma. Una explains her concern that Joy, her mother who now lives with herself and Bill, should not find out that she had received donated ova from an unknown third-party source. She is particularly complimentary about the discreet style of the IVF nurse co-ordinator at ‘Credo Clinic’ who would ring her at home with updates about her treatment outcomes or news of a possible donor ‘match’.
MK Was it difficult to keep this from her [Una's mother]?
UR I didn’t tell anybody I was pregnant until I was five months’ [pregnant] because of the dangers of losing it. Nobody knows it was a donor egg apart from you [and Bill] and the people in the hospital. [Except] I have two friends who know, but nobody else. Some people know it was IVF because when I was working I hadn’t been appointed long before I actually got pregnant, so I thought I’ll have to tell them that it was IVF, it wasn’t just me, you know, sort of having a mistake in my forties …
MK So does your mother think Jodie was conceived with your own egg?
UR She thinks she is just a normal … without the … [breaking off]
MK Why did you decide you didn’t want to tell her?
UR I suppose [as] it had been a well-kept secret for five months plus all the months before with the investigation, I would feel it would be even more deceitful to tell her five or six months on that this just wasn’t an ordinary conception, this was something more complicated. And at 74 years of age, I didn’t want to burden her last years with thoughts of babies born … not that she would disapprove of, but in a way that would sort of perhaps add a burden to her relationship with her. I wanted Jodie to be completely free of any overtones and she is.
MK I’m wondering whether perhaps you have any regret about that decision now?
UR I don’t regret that, no … Have you ever read Bruno Bettelheim? Bettelheim writes of family secrets, and he says that family secrets are to be kept secret because in some respects the adult has to have the responsibility and the strength and the courage to keep the secret completely. Not to let it out at all, you know. The danger is when you let it out in little bits and people pick up little bits and they then want a solution. The search for the solution would cause them distress and the actual resolution may cause them distress. So the adult in you should have the wherewithal to keep it. And I … I agree with that because I think you can cause an awful lot of pain if you reveal something, and the problem seems to be if you unconsciously cannot keep it a secret and it will [get] out somehow. As far as my husband is concerned, he can actually keep that secret and it will never [get] out. I am less strong in that sense, it's more of a burden to me.
MK Do you mean that this is something that niggles you?
UR I suppose it's being in love with a very small person and you’re all-powerful in this small person's life … Now this small non-verbal person is going to grow up to be a thinking, functioning responsible adult. Then I think I’m going to have … I can keep it on store. I can hold it, but I’m wondering when I get to … when she gets to 18, will it not matter? At the moment as she's growing, she's nearly 3 now, it's not mattering at all. When she gets to 4, will it matter less? I don’t know that I’m going up that path, by the time she's 15 it won’t matter at all. It's something to do with the bonding … with motherhood. It's something to do with accepting her as being different … if you had a child who was deaf, dumb, or blind, had spina bifida or something, there is something about it, there is something to do with it not quite being … not right.
Una's dilemma is that she cannot quite foretell how much of the ‘biological’ element surrounding the circumstances of Jodie's conception will matter as she grows from a dependent child into an adult, inevitably asking certain questions of her own. This developmental framing of persons as autonomous individuals (the recognition of the mother and child as normatively separate entities) keeps the relatedness of persons ‘transparent’ (cf. Cussins 1998). Una's ‘burden’, however, is the realization that the conception secret she has co-created (with her anonymous donor, her husband, and the clinic) is not necessarily inalienable; secrets, like gifts, may be given and kept at the same time through the disclosures of others’ indiscretion (cf. Weiner 1992). The developmental trajectory of an individual's biological growth – or what I am inverting here as the (genealogical) ‘life of secrets’– is already an anticipatory breach of certain connections within the Roy family. Una had kept her secret from her own biological mother during all her pre-conception investigatory tests and felt that it would have been too difficult to have confided in Joy at any point during her pregnancy or at the time of the baby's birth. But anything that has not already been said is not simply a matter of the past. Una is all too aware that the secret which she has not disclosed is a form of non-knowledge that has a life of its own.
If the life of the secret unfolds as certain knowledge, it does so in terms of the cultural impact of Una's non-genetic past on both her present and future role as social mother. But this genealogical reckoning of relatedness comes to light, not through the downwards flow of a particular parental line, but through the multifarious attributions of knowledge that may undo the ‘transilient’ relations of these assisted conceptions (Konrad 1998; forthcoming). What if Una’ s mother were to know and perhaps give something away? What if well-meaning friends or neighbours were inadvertently to say something? Una's reasoning is that if conception knowledge is something that may be disclosed bit by bit, then one day Jodie might be hurt or harmed by the discovery of something that she might otherwise need not have known about her biological origins.10 Note that Una stays quiet about the subject of affective ties as enduring substance: there is no explicit talk here of the child wanting to search out its biological mother in later years. The irony, of course, is that the relational web of secrecy lives on in these substitutive contexts through the social reproductions of conception knowledge itself: maternal-child relatedness is the work of making visible what otherwise works by being kept hidden.
However, there is yet another entanglement to point to here: Una's own occasional discursive lapse into conventional ‘geneticization’ talk. At the end of this particular rumination on the merits of Bettelheim's views, Una medicalizes kin relatedness by drawing a genetic analogy between inherited disorders and the social transmission of secrets. She finds a genetic connection between the figure of the social mother with a discontinuous link to her child and the absence of a particular chromosomal arrangement that can cause a genetic disorder in afflicted offspring. Such conventional genetic thinking about ‘breaks’ in hereditary transmission is part of a wider inheritance ideology to do with the optics of making a child ‘one's own’. For Una, the appeal to traditional genealogy is traced through the compensatory physical continuities that establish certain connections between the evidence of resemblance and the transparency of non-disclosure. Need Jodie really ever have to find out about her connection to the past reproductive labour of two ‘mothers’ instead of just one? Why, in fact, should relatedness have to be made transparent at all? Is this conception secret really about the cultural recognition of a certain child's bio-genetic origins?
At this point in the conversation, attention shifts to the way that the notion of a genetic connection rests upon the presumed physical likeness of kin as persons with evident ‘traceability’.
MK Who does your daughter look like?
UR Oh, she's the image of her father! (laughing) And it's freaky really. And I’m very pleased with that. And people just look at her and say ‘gosh!’ And I think, well yes … she's also fair; my husband was very, very fair as a young man. The other freaky thing is – which is so nice for my girl – is that my husband's brother has a Jewish wife, but my husband's people are very fair and Jewish, but his wife is very dark, obviously Jewish-looking, and I’m very dark but not Jewish, and her children are very fair and very blonde and very Anglo-Saxon-looking. And she's as dark as I am. So there's a similarity because her blonde children and her black hair don’t go together and my black hair and my blonde child don’t go together … so my little girl has got first cousins, they are the natural first cousins with the two fathers and the brothers. So her actual blood relatives are exactly the same as her, they’re blonde and blue-eyed, yet their mother is black [sic] like black hair and dark like I am.
Comparing herself to her brother-in-law's wife and non-IVF-conceived children, Una finds a ‘freaky’ but comforting likeness between the two families. In each bilateral pairing, the child's blonde hair and the mother's dark hair can be cross-matched intra-familially, so that the semblance of a resemblance makes both sets of cousins and both sets of parents seem as though they are the cognatic reproductions of the other. And because in this case the dissimulation is a substitution that can never be traced back to its procreative origins (or so Una hopes), the source of difference produces what she, as former ova recipient and social mother, takes to be a ‘freaky’ kind of reproduction.11 So in this particular narrative about the optics of making own, assertions of kinship equivalence produce a particular paradox: what is concealed as hidden knowledge comes to be known as naturally evident fact. Conception secrets, it is felt, need never be revealed because (genealogical) knowledge about who is related to whom appears to have been rendered ‘natural’: relatedness seems perfectly ‘transparent’, in need of no particular emphasis or explanation (see Cussins 1998). Several women recipients from my study similarly said that they would be pleased if family and friends were to remark upon a strong physical resemblance between father and child. Others talked more directly about ‘cancelling out’ the figure of the donor, noting in this regard how confirmations of imputed kin likeness would compensate and thus literally cover over what the social mother otherwise might still remember as her former genetic ‘omission’.
These sentiments can be traced back still further to the physical ‘matching’ requirements of anonymous donation systems. The logic that attempts to screen out sources of difference by limiting likeness to degrees of proximity between the personal characteristics of donor and recipient (mainly hair- and eye-colour, complexion shade, build, and height)12 is epitomized in the special duties of the IVF nurse co-ordinator. Indeed, it is said by clinic staff that one of the best-valued skills of the co-ordinator is her ability to draw together visually, in the mind's eye, what future offspring might look like when all parties to the conception are blended into one entity as the mix of a viable ‘match’. In the course of fieldwork, I was often told by the nurse co-ordinator responsible for these donor-recipient matches that the hoped-for baby should look, at least to her practised eye, as though it could have been the product of a ‘natural’ (non-assisted) conception. It is in this particular sense, of having already drawn a cognitive-visual map of relations as genotypical cross-relatedness, that the arrival of new persons is anticipated well before the physiological event of birth itself.
Tracing the life of secrets: tentative genealogy and predictive genetic knowledge
One of the social effects of predictive genetic testing technology is the creation of new classifications of genetic information and new categories of ‘pre-symptomatic’ persons (Konrad 2002; 2003a). Since predictive genetic information creates knowledge about a person's probable future health and prognosis, in the case of Huntington's and other dominantly inherited diseases, consanguineal kin may find themselves directly implicated in this information, irrespective of whether or not they actually want it. As a Nuffield Council on Bioethics (1993: 4) report on genetic screening notes, ‘genetics and diseases of genetic origin inescapably involve families’ and raise ‘some of the most serious issues’ in terms of the disclosure of genetic data between kin (1993: 42; cf. Advisory Committee on Genetic Testing 1998). Since the ‘right to know’ debates that inform mainstream bioethics literature and policy in this area (see e.g. Chadwick, Levitt & Shickle 1997) have not been built up from people's own experiences, it is important to see how divergent kin with different knowledge interests define and negotiate their own constructions of moral ‘value’.
When donor IVF parents talk about the dilemmas of what to tell their children as they grow up through their teenage years, families affected by Huntington's usually talk about what it is like to live pre-symptomatically between the time of diagnosis and the onset of illness. While Huntington's Disease is primarily a disease affecting adults of between 35 and 50 years of age, in rare so-called ‘Juvenile’ cases, children also may be affected. Uncontrolled movements, loss of intellectual capacity, and severe emotional disturbances are some of the classical ‘textbook’ symptoms. After a ten- to twenty-year course without remission, death inevitably results. For those kin who have received a positive test result after predictive genetic testing, there is the dilemma of not knowing when the latent symptoms of the disease will appear and of not knowing whom, if anybody, within one's family may be similarly predisposed. People are caught waiting, trapped within the anticipations of a fatal prognosis.
Some years ago the feminist sociologist Barbara Katz Rothman (1986) described the uncertain birth predicaments experienced by a diverse group of North American mothers undergoing prenatal testing. She suggested that these conceptions were, in her words, ‘tentative pregnancies’. Amniocentesis and other tests made the mother-to-be into a person who tended to defer the establishment of strong gestational connections with her growing embryo until such time as the baby could be confirmed medically as a viable life form (cf. Browner & Press 1995; Rapp 1999). Similarly, one may say that for a large number of families affected by certain hereditary illnesses, people establish relatedness through the uncertainties that mark out a ‘tentative genealogy’. Such uncertainties are most clearly revealed against the experiential backdrop of predictive genetic testing outcomes – outcomes that are played out as various kinship scenarios concerning the intra- and inter-generational exchange of genetic knowledge between ‘at risk’ persons or Huntington's affected kin.13
However, establishing links between the existence of a family's tentative genealogy and the kinship knowledge of certain conception secrets may at times engender other quite precarious connections. Female in-marrying affines, for instance, often find that they have gone on to reproduce children before knowledge of the disease becomes evident in the in-laws’ family. Several participants (male and female) in my British study had married and commenced child-rearing responsibilities, only to find out subsequently, often when their children were still toddlers, that Huntington's had affected members of their spouse's family, usually a parent. Such predicaments give rise to strong and ambivalent emotions and thus cannot necessarily be eradicated through certain ‘simplifications’ that future genetic policy may wish to enforce, whether as mandatory pre-marital genetic screening, germ-line gene therapy (modification of the DNA of reproductive cells), or other ‘life-saving’ or ‘life-enhancing’ biological interventions.
Other research participants, however, had their own decision-making dilemmas as to why foreknowledge of a genetic illness and of their own eventual ill health did not preclude them from becoming parents. Daisy, for instance, had eventually been told of her mother's diagnosis by her father, who had thought it best to keep knowledge of his wife's illness secret for many years. By the time Daisy decided to go for testing herself, to see whether she was predisposed to Huntington’s, she had already had children with her partner, reasoning (like Una) that she would have children of her own ‘whatever was involved’.14
Affected parents (including the non-Huntington’s-affected partner) agonize over what and how to tell their children about the fact that they may become ill in the future. The ‘burden’ of telling children, or sharing new genetic knowledge with same-generation siblings and cousins, as well as the difficult decisions on the part of affected offspring about whether or not to channel genetic information as an upwards flow to untested parents, appear as recurrent themes in these pre-symptomatic illness narratives. In the following excerpt, Isabel Daley, Huntington's in-marrying wife to Bruno, is talking about the difficulty of thinking about how to tell her ‘at risk’ children what has only come to light retrospectively as her own post-conception knowledge. Isabel does, in fact, communicate the diagnosis to her children.
ID … my immediate concern is what effect giving a child of 5 the knowledge that one day she may have the same … And that is where I have come unstuck because it seems such a harsh thing to give a 5-year-old that knowledge. And Louisa is a worrier and she will go away and be worried about it. So the next question is … she knows what ‘hereditary’ means and we have used the word ‘hereditary’, so I don’t think it is going to be in the next year, but it could be that question is going to be asked … Yes, it will be hard dealing with that knowledge … Trying to teach them not to tell lies, and drawing the line at telling [them that] they may develop the disease …
MK How did you explain ‘hereditary’ to her?
ID I did say that that means that Daddy's Daddy had it. Then Daddy got it. That is hereditary and … I can’t remember, it was just a quick and straightforward thing which she seemed happy with. But afterwards I thought, well, is she going to come back and ask ‘does that mean that I will get it too?’ Which she didn’t and hasn’t. But she can think about things for months, and she has come back with a question, so I think it will come.
Like Una who worries about the questions she thinks her growing child will inevitably ask her and her partner Bill, Isabel wonders how the revelation of particular conception knowledge will change her children's sense of genetic and social identity as offspring related to their now visibly ailing, dying father. Like many other Huntington's in-marrying spouses, Isabel's recently acquired knowledge of her past procreative involvement in the creation of her family's tentative genealogy has changed her own kinship constellation of affinal and cognatic relatedness. She is now a wife who anticipates becoming a widow, the maternal and primary care-giver to two young children whom she fears may predecease her, as well as the central pivotal figure who keeps family and home together as a domestic entity. One may say in such instances that it is genetic knowledge itself that has become the contemporary ‘material’ out of which a social anatomy of memento mori transforms people as ethicized social relations.15
For the Daley family, the fundamental meaning of heredity has become interlaced with how, and crucially how much, genetic knowledge Isabel thinks she should reveal over time to her young, potentially ‘at risk’ children. In such cases, heredity is not simply about the objective existence of a known and specific biological tie, nor is it evidence of what can count as a past genetic transmission. It is, rather, about how the cultural recognition of a particular genetic tie implicates a particular ‘genealogical ethics’. What Isabel and numerous other similarly placed parents talk about is how they decide to evoke certain genetic knowledge as local moralities of [non]-disclosure. It is these decisions, grounded in the deeply situational and context-laden nature of everyday social intercourse, as opposed to the clinical protocol of biomedical procedure and bioethical ‘first principles’, that give moral shape and affective meaning to the genealogical life of these embodied conception secrets.
Further, the extent to which these conception secrets live on, even beyond their repeated telling and retelling, may be exacted through their own material sedimentation. It is not just national or sub-regional DNA data banks that can keep track of the known or anonymized ‘secret’ trails that variously connect persons to, as well as sever them from, their ‘proto-sampled’ [donated to research] body parts.16 In actual practice, people are already their own expert bio-archivists, keeping quiet guard over what otherwise remains a little-known material culture of conception knowledge. Genetic secrets happen to be a fundamental feature of this material culture.
When Isabel mentions how her in-laws’ revelations about Bruno's health were occasioned by another family member's chance discovery, she is making a commentary about the interlinked chains of knowledge that comprise the genealogical underside of this material culture. What had happened was that Bruno's estranged father Oliver had come across a long-forgotten death certificate containing post-mortem details of the likely cause of death of Bruno's paternal grandfather. The search for this document had been initiated by Oliver, who had been feeling unwell and was worried about his increasing irritability and forgetfulness. On the advice of his general practitioner, Oliver had taken various steps to discover the details of his family's medical history. Having found his father's death certificate, Oliver contacted his ex-wife, Susie. She called a family meeting at which she informed her own children that they should seek medical advice about the possibility that they had inherited an illness from their father. Oliver sent a written disclosure of his condition to Bruno and Isabel, but it arrived too late for them to act on it: Isabel was already pregnant with their second child and decided against pre-natal testing.
But it is also the case that genetic knowledge may be ‘archived’ by people with affective intent. Yasmin Davis, an ova recipient who lost both her ovaries and fallopian tubes after surgery during her teens for suspected ovarian cancer, explains why she wants to keep an early ultrasound picture of one of the twins she miscarried from her second attempt at IVF by anonymous ova donation. This second attempt led to the birth of her daughter, Charlotte.
… and I also kept the picture of her twin, and then I’ve got another picture of her with the scar of the twin when the twin had gone so that I can show her. I just keep them for her really. I was always very interested in the chances because my mother had a miscarriage before me and I always used to sit as a child and think: ‘I just think I might not have been around if she … if that one had progressed’. So I kept the picture of the one that got away for Charlotte so she can think the same in a way. That that was the one that might have been me, but wasn’t …
When Yasmin refers to one of the twins she miscarried, she also establishes the legitimacy of her relatedness to her child by drawing on the likeness of shared kinds of inter-uterine life. The ultrasound photo is kept as an affective memento mori for her IVF-conceived daughter; it will serve at some time in the future as a way of guiding knowledge about past relations that would otherwise remain concealed. Charlotte will be told about her tentative birth to the extent that her mother plans to show her how she was once resting inside her within a fluid-filled amniotic sac.17
Yasmin, then, has already worked out the contours of her conception secret and its likely future narration. Mother and daughter both seem to have been the arbitrary consequences of others’ failed and forgotten conceptions, making resemblance something that can be established between them as the common survival of like kinds of inter-generational ‘chances’. They become one another's ‘substance’ in the sense that they share the common experience of a past gestational time-line: both have come to life as the arbitrary growths of former embryonic life forms. Partly, it is the precarious nature of inter-uterine existence that Yasmin imagines as the source for constructing knowledge of common origins between them. She hopes that her daughter ‘can think the same in a way’, since both their respective mothers once miscarried the life of a potential sibling, a ‘vanishing twin’. Loss is converted here into valuable social memory through the ongoing cultivation of an inter-generational female maternal genealogy; knowledge of a future disclosure by Yasmin becomes a vital link in the chain of life that is the ‘time-line’ of this particular conception secret.
But conception secrets, as children themselves well know, often have no clear beginnings or endings. Predictive genetic testing for a late-onset illness raises the kinship dilemma that children may subsequently equivocate over what to tell their parents if they decide to have a genetic test before an ‘at risk’ (untested) parent has found out about his or her own health status. In an autosomal-dominant disease such as Huntington’s, such decisions immediately implicate the maternal or paternal parent in the time of a past act of genetic transmission, though in cases of a positive result recriminations as relations of culpability do not necessarily follow, at least on the part of some children.18 Knowledge travels upwards as well as downwards, but the flows of dissemination can no longer be directed by, nor indeed confined to, the channelling trunks of male-engendered conceptions: the ‘genealogical’ life of secrets does not conform to the pseudo-scientific representations of kinship pedigrees by early anthropologists (see especially Bouquet 1993 on tree imagery and the aborification of knowledge). Siblings, and their talk of the ‘unequal’ distribution of positive and negative results between them, as well as the tendency to turn a blind eye to the cross-lateral flows of knowledge disclosure between families and first cousins, evolve their own codes of knowing what can and cannot be told.
Rex Kingston is the only sibling out of six who turns out not to be predisposed to his late mother's inherited Huntington's Disease. Two of his nieces, Mabel and Nelly Richardson, are also ‘in the clear’ after going for testing to check a possible maternal transmission (their mother is now symptomatic). After the genetic test results are made known within the family, there are considerable conflicts of interest about the responsibilities of care-giving, as well as wrangles between the affected and non-affected kin over the subject of who has ‘got off,’ or escaped from, the disease.
Were one simply to read off objective kinship knowledge gleaned from the genealogical constructs of a medically annotated family tree (as drawn up by the clinical experts at the genetic clinic), the two sisters would be seen to occupy a structurally equivalent position with Uncle Rex. This threesome appear to be ‘lucky’, as they put it, in that they all have escaped what they know for others is a ‘tragic’ (the family's choice of word) genetic inheritance of ill health. None the less, their kinship talk is anchored in various idioms of misfortune, regret, and divisiveness. They all say they feel like ‘outsiders’ within the family and talk of themselves as ‘excluded,’ often referring to one another as ‘the odd ones out’. Rex describes the kinship between himself and nieces Mabel and Nelly as ‘a bond … [we’re] bonded through exclusion … we’re set apart from others, we’re on our own, it's like everybody else on the outside looking in. [It’s] just between us … it's an uneven … it will become harder as others become iller [sic].’ For the Kingston-Richardson family, the affliction of disease becomes everybody's disorder, and heredity engenders far more than simply the lineal inheritance of ‘risky’ genes. It is not just the illness itself but the knowledge of it that is reproduced between kin. Knowledge that a tentative genealogy is shared and that it implicates a common future is thus knowledge that affects everyone. As Mabel says, ‘It's never going to go away – we’re all in it’.
Nelly, Mabel's sister, talks about the resentment directed towards her by one of her maternal aunts. When I spoke with her she was still digesting the genetic information which she had received only a few months previously. Because of the distress and uncertainty she had experienced, she had felt unable to make a direct disclosure of her test result to her sister and to other family members.
NR I thought I would be happy about a good result, but I didn’t really [feel happy]. I just felt guilty. And I saw our Sally after and she said, ‘That is not fair, you got a good result and I got a bad one’. Which made me a lot worse, because I felt bad enough already.
MK Can you remember what she said exactly?
NR I did not actually tell her myself that I had got a good result. Someone had told her and she came in to me where I was, and said, ‘I have heard about you going and getting your test results, and I don’t think that is fair, I think I should have it’. And I said, ‘I feel guilty enough already,’ and later on she said sorry about it, but I do feel funny around her now.
Where is talk about genealogical ethics going?
This article has been concerned with refining the ways in which anthropologists can ask the question of how cultures of relatedness and cultures of biomedicine intersect in the form of new genetic and genealogical knowledge. By isolating one particular practice of knowledge production and reproduction, and by diffracting certain ‘conception facts’ through the lens of certain ‘conception secrets’, we have seen how knowledge afforded by the new reproductive and genetic technologies creates new social anatomies of interdependence. People are ‘assisted’ by various means (strangers, friends and family, technology, skill, expertise, their own bodies) into the parallel ‘worlds’ of tentative conception and tentative genealogy. To make clear how such knowledge departs from earlier anthropological representations of genealogy and pseudo-scientific kinship, as well as to note an analytic departure from certain ordering presumptions of conventional bioethics, I would wish to subsume these social, moral, and affective ‘anatomies’ within the more inclusive term ‘genealogical ethics’.19 In this way, a narrow biomedical and exclusively genetic focus on the medicalization of kinship is broadened, both in practice and conceptually, and therefore helps to reconfigure what is a descriptive shorthand for a number of analytical linkages between newly conceived ‘facts of life’.
We have seen how the two ethnographic studies mentioned here deal with different populations, but also how they are, in a sense, parallel projects. By this I mean that the experiences of families from each of the two projects shadow each other in certain ways as complementary universes. Conception secrets are genetic secrets sometimes, and genetic secrets may also become conception secrets in certain families. In either case, in each patient population the generation of certain conception secrets sets in motion a long ‘chain’ or ‘pathway’ of interconnected kinship consequences. I have argued that this chain can be traced as the genealogical life of the secret, subverting both earlier notions of traditional genealogy as scientific method and the ‘purity’ of consanguineal substance as blood tie, as well as current reifications of the gene as the biologically encoded ‘secret of life’. However, these kinship consequences, taken as the ‘certainty’ of various knowledge stakes, are quite different and not necessarily comparable across these two populations.
According to birth statistics recorded by the UK Human Fertilisation and Embryology Authority (HFEA), some 18,000 children have been born during the 1990s as a result of anonymous gamete donation (including sperm, ova, and embryo donation).20 Withholding knowledge of a child's conception history engenders in parents, infertility experts, the media, and the wider public the fear that at some time in the future genetically related half-siblings, as grown adults, may unwittingly commit incest. One ‘unnatural’ conception is imagined to lead to another ‘unnatural’ conception.21 Such associations may appear as the prospective inversion of Una's ‘freakily’ reproduced resemblances. By another account, however, they may simply comprise the leap of imagination afforded by a negative dialectics of taboo. In the case of predictive genetic testing for the incurable condition of Huntington’s, conception secrets circulate in relation to rather different matters of life. The nexus between life and death becomes highly painful, since non-knowledge or disregard of familial knowledge about one's genetic status may be reproduced as a volitional (or non-volitional) transmission in the next descended generation of affected offspring.
The first ethnographic case-material considered some of the likely cultural perceptions related to the introduction of a third-party (exogamous) procreative partner into the conventional conjugal relation. But even with the removal of the anonymous party, we can see how conception knowledge within families may divide persons, making further relations out of existing relations. Rex, Mabel, and Nelly, as self-perceived genetic ‘escapees’, have become in their own words an excluded sub-group immersed within the wider grouping of their Huntington's affected kin. In both of the studies I have discussed, disentangling the skein of such conception secrets has been an anthropological exercise in tracing the various conception pathways to locate the points at which knowledge – as forms of relatedness – would seem to disappear. Relatedness may recede from view or, conversely, knowledge itself may seem excessive. Either way, relations may be compromised by knowing too little or too much. I have suggested that conceiving the secret as embodied practices of disclosure has become a key site for renewed anthropological interest in the meaning of genealogy for contemporary biomedicine and contemporary kinship theorizing. Specifically, I have placed such anthropological reconstruction work along the intersecting pathways of knowledge disclosure, examining how chains of information are built up by multiple agents, each possibly unaware of the other's existence, or simply unable to anticipate another's claims of interest as specific kinship dilemma.22
In this reanimated biosocial landscape of new gene knowledge, gene modification, and potential therapy, the facts of ‘genealogical ethics’ are built up from the ways in which ordinary people themselves proceed to talk about practices of concealment, partial disclosure, and revelation as negotiated acts of human relatedness. There are obvious implications here for related practices, such as the conception and birth of children as tissue donors on behalf of sick siblings. Talk of ‘designer children’ may divert attention away from how conception knowledge, over time, prevails within families as local explanations of assistance or non-disclosure. Ultimately, it may be this aspect of the new technologies that in the long term is more important and simply more onerous for kinship relations than living with the label of ‘designer children’ or ‘stem-cell’ regenerated persons. In the light of affected families’ own testimonies, I have suggested that it does matter how people make sense of such disclosure practices in terms of their moral and affective significance over time. Tracing the life of the secret is, then, one contemporary materialization of new genealogy. Needless to say, such genealogical knowledge is very different from the conflations made by earlier anthropologists between procreative non-knowledge and ‘ignorance’ of the correspondence between coitus and pregnancy.23
Let me finish by stressing two points. First, assisted practices of tentative conception and tentative genealogy require new reckonings of genealogical relatedness. By following through certain cross-cutting threads that evolve into the skein of entangled conception secrets, we have seen how the analytic focus has shifted from the secret of life to the lived ‘life of secrets’. This exercise in post-genealogical tracing also helps to draw out the way in which newly forged genetic connections entail, in multiple ways, the conception of future, yet-to-be persons as the cultural manifestations of a prospective kinship. Secondly, these observations are directly relevant to kinship thinking and kinship theorizing. Both points ought to be directly relevant to biomedical practitioners and other interested health professionals. Though academic debates on kinship have generally been addressed to a specialist anthropological audience, clearly many such debates are now of immediate relevance to a broader non-anthropological audience. Since the contradictions in people's physiological constitutions and procreative origins may no longer be reliably imagined in terms of an Oedipal vision of the nuclear family, what we may need now is a very different kind of primal scene incorporating or arising from a critical genealogy of genetics. While such projects will perhaps engage the professional interest of those working in fields such as kinship reconciliation and family therapy, practitioners and academic anthropologists may well find themselves appealing to notions of ‘culture’ and ‘kinship’ with highly different inflections. And since little time is taken to deliberate upon the nature of these differences in the crossfire of public debate on developments in medical science, the effect, in practical and policy terms, may well be a sorry case of different experts (including patients themselves) simply talking past and misunderstanding one another. If the requirements of stable heterosexuality, conventional gender stereotypes, the humanist dramas of self-identity and lineal succession are all subjects for the contemporary exploration of alternative family scenes, then so too are the distinctively Euro-American kinship trajectories of conception secrets. It remains to be seen how exactly anthropological analysis of these secrets, both as part of a broader conceptualization of genealogical ethics and comparative cultural analysis of Euro-American attitudes towards knowledge disclosure practices, will realign conventional conceptions of primal certitude as emerging constructs of value.
I am grateful to the families, patients, carers, and health professionals who agreed to participate in the ESRC-funded research projects R00429134168 and R000222290, and I should like to acknowledge the good offices of the UK Human Fertilisation and Embryology Authority for help with research enquiries, as well as the refreshing openness of members and staff of the UK Human Genetics Commission under the chair of Baroness Helena Kennedy. Preliminary sections of the paper were presented to the Fertility and Reproduction Seminar, Institute of Social and Cultural Anthropology, University of Oxford, January 2000. I would like to thank Soraya Tremayne, Heather Montgomery, Renate Barber, Diana Martin, and Alison Shaw for probing comments, and the anonymous Journal readers for their perceptive responses and helpful suggestions. My thanks to Marilyn Strathern for encouraging my conceptual interest in bringing together different orders of knowledge. Thanks are due also to Juliet Miller and Jane Haynes for inviting extended cross-talk on the intricacies of ‘inconceivable conceptions’.
As reified in
To take just a few intercultural variations of one regional example, Papua New Guinea, see, for instance,
See for instance,
On the significance, sensitivity, and different categories of personal genetic information, see the report by the UK
‘Meiosis’ refers to the central event of reproduction informing the scientific understanding of the genetics of heredity. It is the process of cell division that takes place when human and non-human gametes (ova or sperm) are made by female and male organisms.
‘Autosomal dominant inheritance’ is scientific shorthand for parental-child genetic transmission of a biologically inherited disease other than recessive and X-linked transmission. As only one copy of the gene is necessary for a predisposition to the disease and the gene is located on one of the autosomes, rather than on the sex chromosomes, offspring with one parent who carries the HD predisposing gene have a 50 per cent chance of inheriting the disease.
Identification in 1983 of a genetic marker on the short arm of chromosome 4 by an international consortium of research geneticists led to the isolation ten years later of the so-called HD genetic ‘mutation’, evident as the extended trinucleotide CAG repeats. For a rich autobiographical account of HD that charts the simultaneous developments of these scientific ‘discoveries’, see
All names used in this article are pseudonyms, including references to institutions. To protect adult informants, and children's identities, I have felt it necessary to change in certain places only minor biographical details within any given family. Since I have made every effort to stay as close as possible to the verbatim record, none of these author-imposed changes distorts the drift of informants’ own reported experiences. Nor do they affect my core argument. Unless otherwise stated, the ethnographic present refers to the time of my interviewing.
‘Fresh’ here denotes standard biomedical terminology for the non-frozen condition of the embryos at the time of their clinical transfer. Whereas cryopreservation techniques enable the long-term storage of embryos, ‘fresh’ life forms are transferred without delay to the prospective mother (resulting usually in a higher likelihood of successful implantation and at less financial expense to the IVF client).
Una's choice of the term ‘freaky’ also portends the double-edged juxtaposition of the arbitrary with the monstrosity of the abnormal and the perpetration of ‘strange facts’. In this sense, the desire to appear as if a ‘natural’ conception has taken place resonates with the fears associated with breaching ‘the normal’, as well as with the perception that, ultimately, what has been surpassed is an original act of (pro)creation.
Under the terms of the UK Human Fertilisation and Embryology Authority's Code of Practice, each licensed clinic must supply the Authority with certain information about each donor. Besides physical traits, information is collected relating to every donor's interests, hobbies, and occupation. The specificity of such data collection is important since Parliament may decide in the future that adults who contact the Authority and subsequently find out that they were born as a result of treatment using a donor can be given certain non-identifying details about the donor (
The term ‘at risk’ refers here to tested (and currently pre-symptomatic) and untested persons. Untested persons may also be pre-symptomatic but, unlike their tested (and unaffected) counterparts, they do not have this knowledge made explicit. Affected persons, even when pre-symptomatic, are those suffering the progressive symptoms of the disease.
The ambivalence surrounding the temporal trajectories of Daisy's reproductive career, and the ‘choices’ couples make regarding the ‘exclusion’ of affected embryos prior to conception through techniques of pre-implantation genetic diagnosis, are discussed in greater detail in
It was the custom for seventeenth- and eighteenth-century European anatomists, such as Frederik Ruysch and William Hunter, to reveal the ‘inner beauty’ of living bodies through the preservation of dead bodies. The use of memento mori devices, such as handkerchiefs, ribbons, laces, or beads (displayed in some of Ruysch's preparations of new-born babies in glass jars) was intended to add grace to the deceased person or foetus.
See, for instance,
For cultural interpretations of the visual power of ultrasound imaging, see, for instance,
My research findings conform here closely with those of
Elsewhere I consider in greater detail the implications of the ethico-temporal aspects of new genealogical knowledge for the solipsism of rights-centred bioethics discourse. See
This figure excludes IVF data prior to 1991 and refers only to children categorized as ‘live births’ from 1 January 1992 onwards. My thanks to Richard Baranowksi from the HFEA for help with gathering this particular set of IVF data.
It is planned that from the year 2008 16-year-olds who are contemplating marriage, or any person over the age of 18, may request conception information from the HFEA in order to find out whether they are related consanguineally to a prospective marriage partner.
Thus, secrets have social lives, but the genealogical life of the secret may not necessarily be retrievable as ‘biography’ (cf.
Backtracking in another direction, one may be reminded of
Des secrets de la vie à la vie des secrets: tracer le savoir génétique comme éthique généalogique dans le domaine biomédical britannique
Je démontre que les faits d’une ‘éthique généalogique’ sont fondées sur des moralités locales de divulgation et de non divulgation de l’information. Dans le contexte des technologies de tests génétiques prédictifs, les membres de la famille doivent discriminer entre l’information génétique qu’ils pensent être ‘bonne’à savoir ou à faire savoir et les connaissances qu’ils pensent être ‘mauvaises’à dire et à partager avec les autres. Mais les tentatives de composer avec les implications que la connaissance génétique anticipée peut avoir sur la parenté, entraînent fréquemment des processus non résolus de prise de décision, au sein au et au fil des générations. Perçus comme des expériences corporelles d’ordre moral, ces dilemmes à l’égard du savoir génétique suscitent également une myriade d’intérêts et de revendications au-delà de la vie d’une personne quelconque. Cette article étudie pourquoi la formulation spécifiquement anthropologique d’une ‘éthique généalogique’ défie les prémices conceptuelles de l’autonomie individuelle qui étayent les débats bioéthiques occidentaux actuels sur ‘le droit de savoir’.