From Saartjie Baartman to Dolly the Sheep: what does genetic integrity mean?
- July 22, 2022
- Lynn Åkesson
The notion of integrity evolves with each generation. When it comes to how the idea is applied to genetics, it is worth starting to consider the moral implications of future medical development now.
This essay originally appeared in ‘Consciousness, Genetics and Society: Perspectives from the Engelsberg Seminar’, Bokförlaget Stolpe, in collaboration with the Axel and Margaret Ax:son Johnson Foundation, 2002.
Imagine the following scene: in London in 1810 a chained, almost naked woman is exhibited in public in Piccadilly. She is a Hottentot, imported from Africa, and causes a sensation — not least because of her large behind. She is seen as representing the stage between ape and human, which it was then believed the Hottentots constituted. Many people were shocked and angry, considering the exhibition demeaning both to the woman and to the public. The Africa Association, who (in their own view) were very eminent and well respected gentlemen, took the matter to court. ‘On behalf of the unfortunate woman, exhibited under circumstances unworthy of a civilised country’, they wished to get the court to stop the ‘scandalous and unseemly’ exhibition. The woman, Saartjie Baartman, was called to testify. She seemed to agree to allow herself to be exhibited, explaining that she was satisfied because she was sharing in the takings from the show.
Although the reasons for her consent were presumably as highly dubious as Saartjie Baartman’s financial return from the agreement was, the show continued on to other English towns. In 1813 Saartjie Baartman was moved to Paris, where she was first shown in an animal show and then at the Théatre de Vaudeville as ‘The Hottentot Venus’. When in 1815 she died, her body was dissected — primarily her genitalia — very carefully. Eventually her remains and a wax copy of her body ended up at the Musée de l’Homme in Paris. Only in the 1960s did this wax figure and her remains become a liability from a racist viewpoint, and they were later moved to the museum’s cellars, away from the public gaze. The geneticist Steve Jones, who has described Saartjie Baartman’s story in his book In the Blood (1996), concludes his account by reporting that, when writing the book in 1995, there had been a request from South Africa that the remains and wax effigy should be returned to the country of her birth. The body ,even in the form of a wax effigy, still carries a moral and political message. On 29 April, 2002 this request was finally granted. In several articlespublished at the end of April the Swedish daily paperSvenska Dagbladetcovered the event, when in Paris the remains were handed over to anAfrican delegation. The symbol of Saartjie Baartman returned home.
Saartjie Baartman was not alone in this parade of deformity. At circuses and other events throughout Europe (and even in Sweden) bearded ladies, Siamese twins, snake people and abortions of all kinds were shown. Anatomical collections and museums were filled with malformed humans and parts of humans. The desire to see the aberrant, alien or deformed with one’s own eyes seems to have been insatiable. Such things do not happen today. It is almost impossible to exhibit human beings on the basis of their handicap or skin colour. Genetic reasons are not sufficient for today’s freak shows. Artists who allow themselves to be chained up, hang weights from their penis, or for that matter expose their behinds, now have different motives, an appeal to other cultural undercurrents than a fascination with the biologically different.
From our perspective, Saartjie Baartman and all the others are glaring examples of an infringement of integrity, and of degradation and discrimination on genetic grounds. This applies even if the people exhibited had agreed to be shown, and even if they shared in the takings. One must assume that for many circus acts were their only opportunity of making a livelihood. But the current debate about genetic integrity now leads beyond the idea of being visibly different. It also focuses on the inside of the body, on tissue fragments, drops of blood, saliva, sperm and hair. Here is an invisible microcosm, where even the smallest component contains all the information about the entire biological being, but which requires expertise in order to interpret. It is frightening that someone else, not you yourself, is able to read your genetic text, and possibly use the information against you.
The arguments about genetic integrity are well known. They have to do with being discriminated against on genetic grounds, and thus of being excluded from the labour market or from insurance policies. They have to do with who should have the rights to knowledge of your personal genetic design, and how such information can be used. This covers the blood tests and tissue samples from the living and the dead that are stored in hospital archives, and what opportunities these samples represent. Can they be used in the development of medicines and, in that case, should the pharmaceutical companies alone derive financial benefit from them? What if they end up in the wrong hands and are used by evil forces, by terrorists against a defenceless population? But even the best hands may in the long term prove to be the wrong ones. Genetic information for one’s own use is not unproblematic. It can be a competitive advantage both in the labour and the marriage market. And if sufficient numbers of people routinely allow themselves to be tested, the pressure on those who do not will be considerable. Those who are not tested and for that reason, for example, have children with a disability, have only themselves to blame and will have to get by without the support of society. If you want a thing done, do it yourself, but beware of becoming your own worst enemy.
What is right and reasonable is culturally determined, and varies across time and place. The example of Saartjie Baartman shows us this. The perspective has changed since then, and it will also change in the future. Thus it is all the more important to take those future scenarios discussed in connection with genetic integrity seriously. Even allowing for the fact that the future rarely turns out as we imagine, the debate itself is important, envisaging as it does that perspectives and claims of truth are changeable. Problematic and complex issues are undoubtedly involved in the discussion of genetic integrity. There are good reasons to assume that what it is technically possible to achieve will be achieved, and will also receive cultural acceptance. This technical imperative has manifested itself repeatedly throughout history.
Today genetic integrity has become a hot potato. The time is long past when our living bodies could in a happy-go-lucky way be exhibited in a circus. It may well be that reality TV shows fulfil a similar function for us today. In these, the TV camera, and therefore the TV audience ,follow human bodies into the most private of situations. Compared with both these phenomena, protecting the microcosm of genetic integrity may appear strange. Why should some forms of bodily exploitation be tolerated, but not others? One answer proceeds from science and technology. The rapid development of knowledge in genetics and gene technology’s accelerating opportunities give fragments of the body a new significance, and point threateningly into the future. But there are other possible explanations which have to do with our view of the body.
If one consults a thesaurus, the double meanings of the concept of integrity appear. According to the dictionary, the word can mean : uprightness, honesty, rectitude, righteousness, virtue, probity, morality, honour, goodness, decency, truthfulness, fairness, sincerity, candour, principles, ethics
In other words, this corresponds to the aspect of integrity which has to do with dignity, with honour and shame.
The second meaning has to do with wholeness: unity, unification, wholeness, entirety, completeness, totality, cohesion
A different way of describing the concept of integrity is that in its first meaning it represents a moral tradition connected with human dignity. To infringe integrity in this sense implies degradation and shame. The second meaning has more to do with a scientific and classificatory use of language, with a stress on system. To infringe integrity in this sense means to disturb a certain order. When a present-day observer is disturbed at the treatment of Saartjie Baartman and her peers, it is because human dignity is put at risk. The same is true of the way reality TV treats human beings, if anyone nowadays can be disturbed by such programmes, despite their frequent occurrence. When genetic integrity is compromised, control over one’s own body as a whole and its parts is threatened. In both cases, therefore, the participant’s bodily integrity is infringed, but in different senses of dignity and wholeness.
Now it is not so simple to maintain the distinction between the two meanings of the concept of integrity in practice. The meanings merge with one another so that the current debate about genetic integrity also encompasses dignity. It is, therefore, not merely unjust, but also undignified, to be discriminated against on the grounds of genetic factors. Despite this, an awareness of the concept’s dual meaning may increase our awareness of the shifts between its two poles. And the shift in meaning is in the direction of wholeness and undisturbed order, towards the body as private property. This is a body in which dignity is linked to control and the right to self-determination, a body linked to personal identity and sovereignty. There is a strong link between integrity and identity.
The concept of genetics on the other hand has to do with the theory of heredity, with origins, extraction and the family line. This is a problem in the discussion on genetic integrity. The view of the body as something private, something that one oneself has the disposal of, here comes into conflict with the very core of genetics, namely that genetics is to do with entire family lines.
When we talk about people having a genetic predisposition for a disease, the problem becomes clear. In some families information flows freely between the different branches, while in others communication comes to a full stop. Old conflicts, relatives you do not know, or do not care for, and the fear of upsetting or provoking someone are some of the obstacles. Some diseases are considered so shameful that it is only as adults that people have discovered a relative has fallen ill or died from one of them. Knowledge of such blood ties have been covered up in tales of family history. In other cases the family is scattered, the ties are broken, and the useful information has thus vanished.
Even for doctors involved in treatment or genetic consultants this is a difficult situation. Usually the patient’s disease is something between the individual and his or her doctor and nothing to do with anyone else. In genetic diseases, the doctor’s responsibility is still limited to the patient, but his need for information may stretch beyond this. In order to be able to make a correct diagnosis it is not enough to take tests from the individual patient. If information about the family is lacking, it can be difficult to continue treatment. The wish of a family member to know can then come into conflict with another person’s right not to know; one person’s integrity conflicts with another’s.
Genetic integrity spans large areas. It moves in the field of tension between the requirements of the individual and those of the family, between the meanings of dignity and undisturbed wholeness, between private and public, between the imperative law of the state and the urgent demands of the collective.
Concepts tend to become summary descriptions, symbols of something that stretches far beyond the word’s literal meaning. One concept of this kind is ‘cloning’. When the debate on cloning was at its most intense in connection with the birth of Dolly the sheep in 1997, ‘cloning’ became a collective concept for everything evil that new technology might bring in its train. The concept has since retained this collective mistrust and lack of faith in the world of research. In everyday speech, strip cartoons, art and popular fiction, cloning is often presented as an example of irresponsible research and terrifying technology, this despite the fact that cloning is not a new technology, and occurs naturally, as for example when potatoes multiply. The nightmare scenarios are associated with the idea of cloning humans, which deep down challenges our fundamental view of the unique character of the individual human being.
Another such symbolically loaded concept is ‘patent’. But where cloning summarises the evils of technology, the concept of the patent has come to summarise all the dangers and the evils that might be associated with the relations between gene technology, biotechnology and money. There is something deeply repugnant in the idea of making money out of the human body or body parts. And if this is to happen, then no one other than the owner of the body should derive any financial benefit. Just as with the concept of cloning, the concept of the patent is not free from contradictions. Sick people pin their hopes on the development of new drugs, and producing new drugs requires patents. Few are opposed to this. It is when the patent is linked to human biological materials that distaste is felt. But not even then is the aversion to patents unambiguous. At the same time as patents on biological materials are criticised because the body should not be a product, a thing, there are growing demands for finding cures with the aid of technology. The wishes of the sick can then be opposed to the needs of healthy people and different patient groups. Even within one person there are contradictory feelings and expectations. One may, for example, be positive about a specific drug, but generally negative about the technology and the economics that lie behind its development.
The concept of integrity has also acquired a wider symbolic meaning. But what is summarised here is not the threat but the resistance. Integrity has come to represent the protection of the individual human being against economic, technical, social, cultural or religious exploitation. Genetic integrity is then to do with the least human component being ascribed the same protective value, the same right to self-determination as the body and the individual from which it originates. Genetic integrity raises the question of who actually can claim the body, its parts and fragments. To whom do its genes belong? The individual, the family or all humankind? As has been shown, this is a question that is not easily answered.
When one discusses the problems of integrity with people who have a genetic disease in their family, they often display a surprisingly generous attitude to their own body being used for research purposes. Their point of departure is that in this way people can help, if not now then perhaps in the future. The health service holds a special position because it is regarded as altruistic, and the research pursued in association with health-care is considered to be free from commercial interests. One cannot ignore the thought that, with this generous attitude to their biological material, they perhaps also harbour hopes of better and quicker treatment. At the same time people who know no treatment is within reach on their part, also show the same willingness to share without compensation.
The complicated question of donation involves many motives. When it is linked to integrity then volition is decisive. Donating blood, tissue, organs or one’s entire body is not antithetical to the donor’s integrity. As long as the donors themselves decide, their control over the body is retained. The symbolic importance of the concept of integrity is not challenged. The extent of the volition is a different matter. On the basis of historical facts it is easy to question Saartjie Baartman’s agreement and free will to be exhibited in the circus. It is considerably more difficult to penetrate the external pressures or personal hopes that affect modern volition.
Imagine the following scene: In Berlin in 2001 there are long queues outside the old post terminus on a chilly, rainy Sunday in February. Inside the terminus the exhibition Körperwelten (The World of the Body) beckons, with preserved human bodies and body parts arranged in artistic, classic poses. The centrepiece of the exhibition is called ‘the rider’ and consists of a whole horse whose rider holds two brains in his outstretched hands — his own and that of the horse. As with all the other figures, the horse and man have been stripped, layer by layer, of skin, muscles, nervous system and skeleton. Another creation shows a young woman, a foetus fully visible in her dissected belly. Apart from whole bodies arranged as ‘the fencer’, ‘the chess player’ or ‘the runner’, there are many individual body parts. There are brains, blood vessels, foetuses in different stages of development, bodies dissected laterally and vertically, both with and without defects, both healthy and marked by disease. One might imagine this to be a collection from the nineteenth century, chosen from the packing crates in some museum cellar. One might also believe that, exactly as in the case of Saartjie Baartman in the museum in Paris, this is a question of artificial bodies. That is not true either. These are authentic remains of modern people who have donated their bodies to a German anatomist, Günter von Hagen, fully aware of how they would later be used. It is not clear, however, whether the donors received payment for their posthumous collaboration.
To judge from the ticket prices, the queues, and the knowledge that this exhibition had had full houses all round Germany, it seems, however, that the exhibition itself does good business. The exhibition shop’s usual selection of key-rings, T-shirts, fridge magnets and watches – even when decorated with more unusual motifs taken from the exhibition — reinforces the impression of commerce. But Günter von Hagen assures readers in the exhibition catalogue and in a video on sale that his motives are purely altruistic. It is not right, he says, to reserve knowledge of how the body is constructed to those studying medicine.
Everyone has the right to know and see with their own eyes what bodies, organs and skeletons look like after, for example, a stroke, a heart attack, after smoking for many years, etc. The fact that the bodies have been displayed in pleasing or dramatic poses underlines the body’s artistic and aesthetic qualities, and at the same time fulfils an important educational function. The title of the catalogue and video are logically called ‘Anatomy Art’. In order to communicate the originator’s message about diseases and bodies in modern society, artificial products or clever computer programs are not enough. The exhibition’s German subtitle ‘Die Faszination des Echten’ (The Fascination of the Real) is clear: only the real thing is able to communicate the correct feeling.
The large crowds prove von Hagen right. Anyone finding their way through the exhibition to the visitors’ books, will find interesting reading. Expressions of gratitude fill the pages, gratitude at having been able to see and experience the inside of a human being. The objections are considerably fewer, but are also to be found. The moral objection aired is that real people are being exposed and being deprived of both dignity and the peace of the grave. A further objection has to do with family relations. Some of the bodies are easily identifiable, with faces, hair or tattoos intact. One may wonder what it means for the onlooker to encounter his father, sister, son or cousin in a preserved form in an exhibition.
The exhibition was first shown in Europe in Mannheim in 1997 (two years earlier it had toured Japan). In Mannheim a violent debate broke out with ethical and moral overtones, not entirely unlike the debate in London in 1810. If we return to the two meanings of the concept of integrity, criticism of Körperwelten has the clear characteristics of an infringement of integrity that is to do with human dignity. The second meaning, where integrity stands for undisturbed wholeness clashes totally with the fundamental idea behind the exhibition, which after all is based on decomposition and fragmentation. This practice has, on the other hand, not aroused any great criticism. This may well be because Günter von Hagen not only deconstructs but also creates new entities.But it presumably means more that the exhibits, when alive, can be assumed to have had control over their bodies, and thus had the power of deciding themselves what was to happen to them after their deaths. But, just as in the case of Saartjie Baartman, who also (although on somewhat dubious grounds) declared herself satisfied with her treatment, the individual’s motives and decisions alone are not enough to settle the issue of crimes against integrity. The moral question of human dignity is also the observer’s problem. Although almost 200 years separate Saartjie Baartman from Körperwelten, both exhibitions focus on an important intersection between the different meanings of the concept of integrity.
At that intersection the idea of a superior, collective, inviolable human dignity clashes with that of individual self-determination, of the body as personal property, as a private concern. In this way, too, are exemplified the concepts of consent, volition, donation — and integrity.