an
international and interdisciplinary journal of postmodern cultural sound, text
and image
Volume 3, August 2006, ISSN
1552-5112
Will
Biomedicine Transform Society?[1]
In the field of biomedicine, there
seem to be two parallel universes. In first, in the developed world, many
believe that we are on the threshold of an epochal change. The sequencing of
the human genome, it was claimed, would enable experts to read the book of
life, decode the code of codes, remake Eden, usher in a brave – or terrifying –
new world. Our genotypes would be read out, coded on a chip, and used to
predict our fate, diagnose our diseases and to personalise our medicines. New
reproductive technologies would enable a world of designer babies and
engineered people. Human stem cells would regenerate damaged human tissue, cure
spinal injuries, heart disease, diabetes, Parkinson’s and Alzheimer’s. Smart
drugs would enable us to engineer our moods, emotions, desires and intelligence
at will. Some of the biomedical techniques cited insuch futurology are already
familiar, but most are said to be ‘just around the corner’. Each day seems to
bring news of research that promises to increase our ability to modify,
manipulate, transform our living bodily processes at will in pursuit of our
secular desires.
Hopes here are also political and economic. UK Prime
Minister Tony Blair, at the European Bioscience Conference in November 2004,
said: “Biotechnology is the next wave of the knowledge economy and I want
Britain to become its European hub”.
Biotechnology, especially biomedical biotechnology, is seen as a key
driver for the knowledge economy. Here, some hope, we will see a virtuous
alliance of state, science and commerce in the pursuit of health and wealth.
But there is no hope without fear. The UK House of Commons Trade and Industry
Committee Report on Biotechnology, 2003, writes:
With biotechnology such a focus of public policy in
Germany, France, Canada, Singapore, Puerto Rico, Israel, and Ireland, amongst
many others, fears have arisen that the UK may not be doing enough to nurture
an industry seen to have such potential and may be in danger of jeopardising
the advantages of its early start in the field…
The same report tells us that pharmaceutical
biotechnology is the dominant branch of biotech, and that in 2002 the UK biotechnology
industry had a market capitalisation of £6.3 billion, accounting for 42% of the
total market capitalisation of European biotechnology. Ernst and Young reports
that the US biotech sector is a US$33.6 billion industry, with a total of 1,466
companies, 318 which are public.(Ernst & Young, 2003) They also report that “In Australia… total
revenues among publicly traded companies increased 38 per cent from $666
million in 2001 to $920 million in 2002. The number of… people employed in the
industry jumped 24 % from 5,201 to 6,464…The Japanese government anticipates
the nation’s biotech work force will surge to 1 million by 2010, an enormous
increase over the estimated 70,000 today. Government officials plan to double
their investment in biotechnology in the next five years.” (Ernst & Young,
2003) In our own era of shareholder
value and promissory capitalism, such expectations about the generation of what
Catherine Waldby has termed ‘biovalue’ –the value to be extracted from living
processes themselves - play a key political and economic role. (Waldby, 2000)
Yet, in another universe, things look rather different.
The World Health Organisation repeatedly reports that the world’s biggest killer,
the greatest cause of ill-health and suffering across the globe is coded Z59.5
in the International Classification of Diseases. The condition Z59.5 is extreme poverty. By
the end of last century almost 9 out of 10 children in the world had been vaccinated
against the five major killer diseases of childhood, and global rates of infant
mortality had declined over two decades by over 25%. Yet at the start of the
twenty first century, some 12.2 million children under 5 in less developed
countries—equal to the combined total population of Norway and Sweden—still
died every year mostly from causes that could be prevented for a few US cents
per child.(World Health Organization, 2002) The gaps between rich and poor are
widening, exacerbated by AIDS in Africa - a person in Malawi has a life
expectancy of 39 years, in the most developed countries life expectancy is
twice this at 78 years.
Yet a tiny proportion of the resources of our new
biomedical era are directed to the major health problems of the majority of the
world’s population. Médecins Sans Frontièrs reported in 2004:[2]
Ten years ago, the world spent US$30 billion on health
research of which under 10 percent was spent on 90 per cent of the world’s
health problems – a disparity known as the ‘10/90 gap’. Today global spend on
health research has more than tripled to under US$106 billion, yet the amount
allocated to the R&D for drugs to treat 90 per cent of the global disease
burden has risen by a mere US$ 0.3 - 0.5 billion to around US$3.5 billion, mainly
due to contributions from private foundations, governments, and charities.
Thus, the 10/90 gap doesn’t just persist, in percentage terms it shows alarming
growth over the last decade.
A recent study shows that of 1393 new chemical entities
marketed between 1975 and 1999, only 16 were for tropical diseases and
tuberculosis. There is a 13-fold greater chance of a drug being brought to
market for central-nervous-system disorders or cancer than for a neglected
disease.(Trouiller et al., 2002) The pharmaceutical industry argues that
research and development is too costly and risky to invest in low-return
neglected diseases. But pharmaceutical companies massively over-inflate claims
as to the costs of developing new drugs – they like to quote an estimate of
around $800m to bring a drug to market, but the actual cost reduces to between
$71 and $118m when proper accounting criteria are applied.(Relman and Angell,
2002) Such claims are used to justify inflated prices and extended patents that
place drugs out of reach of poorer countries–dramatically highlighted by the
bill of indictment laid by multinational pharmaceutical companies against
Nelson Mandela and his government in South Africa for ignoring or violating
patents on retrovirals. Global inequalities in health have now come onto the
political agenda in a big way. Yet the gulf between the problems of this world
and the promises of high tech biomedicine seems immense.
In the first universe to which I referred, the
prospects raised by biomedicine have caused consternation amongst politicians,
regulators, theologians, philosophers and others. A whole new profession of
bioethics has been invented to debate them. These debates have been
particularly intense where they involve ‘the right to life’ – the role of
embryonic stem cells in the US elections is the most obvious example. Some
governments have enacted laws to limit some of these developments, especially
those relating to human reproduction. Many have set up committees and
commissions to deliberate over where the line should be drawn between the
permitted, the regulated and the forbidden. Somepressure groups have campaigned
for restrictions to be overthrown to allow the research that might bring hope
to their loved ones. Others have campaigned for restrictions to be tightened,
notably those that seek to protect the ‘sanctity of life’ of the ovum from
fertilization or even before. Some hope to settle these debates by appeal to a
transcendental religious morality or an equally transcendental human ontology.
For some, the key issues concern individual autonomy and informed consent - who
should have the power to make decisions in each troubling situation where a
decision has to be made about the selection of an embryo, the conduct of an
experiment, the licensing of a drug, the termination of a life. For others, the
issues are consequential, moral, sometimes spiritual – what kinds of society do
we want, what is a proper ‘human’ form of life. Many prominent intellectuals
have been drawn into this debate. Frances Fukuyama, Leon Kass and Jürgen
Habermas each argue that biomedicine is in danger of violating human dignity,
human identity, human nature itself – for them, we tamper with our ‘nature’ at
enormous risk, ultimately, to the human soul (Habermas, 2003, Fukuyama, 2002,
Kass, 2002, President's Council on Bioethics (U.S.) and Kass, 2003).
Yet bioethical debate in Britain, Europe and the USA
has not been much exercised by global health inequalities. The recent special
feature on global inequalities in public health in The Lancet contained
few contributions by bioethicists; one bioethicist who did contribute remarks
on this lack of conversation between ‘frontier bioethics’ and ‘everyday
bioethics’ – while bioethicists concentrate on individual autonomy, rights and
protections in high tech medicine, they seldom address the ethical issues
raised by the mundane, routine, global depredations of illness and premature
death.(Berlinguer, 2004) This global
letting die on a massive scale somehow does not seem to register as a
bioethical problem. I will come back to these normative questions at the end of
my talk today. I am not a bioethicist but a sociologist. So what, then, of the
sociologists?
Most of those in my own discipline have tended to cast
a jaundiced eye on developments in high tech biomedicine in our first universe.
They tend to see it as one more stage in the long tale of medicalization. They
say that medicalization individualizes, it turns our attention away from the
social causes, and social solutions to ill health. They term its current form
‘geneticization’ – a view of the implacable genetic determinants not only of
diseases but of other human characteristics and human inequalities. Some
suggest that this is leading to a new eugenics, seeking to eliminate those
genetically inferior. Others criticise the ways in which more and more everyday
troubles are coming within the sphere of medicine, and technical fixes to
misery and ill health are replacing an attack on social causes. Some of these
points are well made, but many seem to me to be wide of the mark. They are
fighting the battles of a previous war. In this old debate, biological and
social explanations were implacably opposed and associated with contesting
political and ethical positions - the biological was inevitably on the side of
reaction and the social on the side of the progressives. Today, I think, we
need a different perspective.
Take individualization. In fact, contemporary
genetics does not individualize. It involves new ways of tracing connections
and making connections. For example,information that I may find out about my
genetic complement traces new connections, and imposes new obligations, between
myself, my parents, relatives, brothers, sisters and my children, including
those born through the donation of my sperm. Another example: a host of
genealogy tracing companies now offer to identify your roots and the
geographical origins of your ancestors on the basis of
a sample of your DNA. Most significantly, perhaps, we can see new
collectivities forming. Paul Rabinow, who studied those campaigning for genomic
research on the dystrophies, coined the term ‘biosociality’ for such groups; we
can see similar patterns in campaigns around manyother genetic
disorders.(Rabinow, 1996) Biosocial communities, often geographically
dispersed, sometimes virtual, are brought into existence around a shared
condition; they actively strive for research, for funds, for support, for
therapies for ‘their diseases’. They educate one another in the disease
mechanisms and practicalities of care, donate tissues and blood for genomic
research, and seek to take control of their own biological destiny and to bend
medical and scientific knowledge and expertise to their own ends. Some groups
have even patented the genes at the root of their disease. I term those engaged
with these new forms of activity ‘biological citizens’.(Rose and Novas, 2005)
In the advanced liberal societies of ‘the west’, they govern themselves
according to an ethic of active citizenship and are obliged to manage their own
lives through choice, to take responsibility for their future and to maximise
their own potentials.(Rose, 1999) This, of course, generates its own problems
for those unable or unwilling to be active and responsible in this way.(Callon
and Rabeharisoa, 2004) And it should not be confused with democracy, for only
some diseases (especially those of children), and only some biological citizens
have the cultural capital for effective mobilization.
Unlike many sociologists, then, I do not think contemporary
biomedicine is reactivating fatalism in which individuals, or those who govern
them, consider that ones capacities and potential is given in ones genes.
Biology is destiny – so went the old adage. That may once have been so, but it
is no longer the case at the molecular level at which living processes are now
understood. Biology is no longer destiny but opportunity. Molecular biology and
genomics are interventionist disciplines. To understand the nature of life at
the molecular level is to open it up to intervention. In this style of thought,
life can be reverse engineered, taken apart in the laboratory, its processes
broken down into their elements, and then put back together again. Life becomes
open to artifice at the molecular level. This is why I suggest we are involved
in a ‘politics of life itself’.(Rose, 2001) A politics because all these
developments are highly contested. And ‘life itself’ because it is not just
illness that is involved, nor even the maximisation of health – it is the management
of human vitality itself. To deem an aspect of human life biological today is
to suggest that it can be transformed though technology.
The troubled discourse of bioethicists, poplar science
writers and social theorists in the developed tends to be futuristic. It often
rests on overstated claims about the marvels that bioscience and biomedicine is
about to achieve. Contemporary biotechnology – no doubt following a pattern
familiar from other technologies – thrives on such exaggerated expectations of
epochal changes just around the corner. These claims generate publicity,
inflate share prices, mobilise funding agencies, enhance careers and, no doubt,
generate a sense of excitement and mission for those working in the
field.(Brown, 2003) While it may be true that many of the phenomena of life -
from reproduction to emotion – now seem to be understandable as mechanisms, in
most cases we are a long way from being able to re-engineer them at will. Even
for IVF (In Vitro Fertilisation), now often considered old technology, 75%-80%
of treatments fail in each cycle in the UK – with consequences being studied by
my LSE colleague Karen Throsby.(Throsby, 2004) In the US – where private
clinics vie with one another to claim a high success rate – recent research puts
a woman's chance of getting pregnant with IVF when she reaches 42 at about 4%.[3] The
cautionary note about exaggerated expectations recently struck by some social
scientists is welcome. While it often appears as if our current limits are
‘merely technical’ and will soon be overcome, evidence does not indicate a
revolutionary change in the therapeutic capacities of our medical
practitioners. But this does not mean that nothing is happening. Let me
consider some examples. They certainly illustrate the differences between dream
and reality. We are not in the midst of an epochal shift, on the brink of
utopia or dystopia. But we are inhabiting what I term an ‘emergent form of
life’.
First, predictive genomic medicine. The revolution
ushered in by the sequencing of the human genome was initially thought to lie
in the area of predictive and preventive medicine – identifying the DNA
sequences that would lead to disease before symptoms emerged in order to
initiate preventive measures. Many of the specific mutations related to rare
single gene disorders have indeed been identified, though preventive
therapeutic interventions have proved much harder to develop. But there is the
technique of preimplantation genetic diagnosis or PGD, which combines in-vitro
fertilization and genetic testing. Embryos are created outside the womb, a cell
is removed and gene sequences examined for specific genetic diseases, and only
those free of the markers for these diseases implanted. Will developments of
this sort lead to a new ‘liberal eugenics’—where those with qualities thought
undesirable are eliminated before birth, increasing stigmatisation of those
with disabilities who do live?
Eugenics was the programme, initially articulated by
Francis Galton in the late nineteenth century, that tried to improve the
‘quality’ of the population of a nation by acting upon individual reproduction,
ensuring that those of the best stock reproduced themselves and passed their
superior qualities down to their children, whilst those of weaker or defective
stock bred less, or, in some cases, were prevented from breeding at all. As we
mark the 60th anniversary of the liberation of Auschwitz, I do not need to
rehearse the murderous form eugenics took in Nazi Germany. But we should remind
ourselves that it started with elimination of inmates of mental asylums: deemed
individually to have ‘lives not worthy of life’ and collectively to impose
insupportable burdens on the healthy population of the Reich.(Proctor, 1988)
Coercion was only one element in these strategies, which also sought to modify
professional and public attitudes and individual judgements by education and
counselling. Many German doctors took their own decisions on eugenic grounds;
in the context of a widespread campaign of propaganda and public education,
parents often requested eugenic measures for their own children.(Burleigh,
1994) The Nazi’s looked admiringly at the policies enacted in the United States
to restrict immigration from the lower races – Slavs, Southern Europeans – and
to compulsory sterilize many of inhabitants of asylums. Eugenic policies of
forced or coerced sterilisation of those considered threats to the quality of
the population – notably inhabitants of mental hospitals, the ‘feeble minded’
and those deemed incorrigibly immoral or anti-social – were put in place not
only in the US and Germany, but in Switzerland, Denmark, Finland, Norway,
Estonia, Iceland, Mexico, Cuba, Czechoslovakia, Yugoslavia, Lithuania, Latvia,
Hungary and Turkey – to name but a few. Eugenic advice to parents and
prospective marriage partners was widespread in these countries, as it was in
the UK. Sterilisation on eugenic grounds continued into the post-war period in
a number of democratic nations. In Sweden, the sterilization laws stayed on the
books from 1935 to 1975 - in a paternalistic welfare state, the good shepherd
must be prepared to take harsh decisions in order to reduce the burden that
sickly sheep would place upon the flock as a whole (Broberg and Roll-Hansen,
1996, c.f. Foucault, 2001). Up until the 1950s in Britain and the United
States, eugenic considerations infused reproductive advice to prospective
parents in the new profession of genetic counselling. (Novas, 2003)
Contemporary genetic counselling, and contemporary reproductive
genetics, explicitly rejects such directive ‘eugenic’ advice which judges the
worth of potential children from the perspective of their contribution to the
national population. It asserts the values of individual autonomy and informed
choice. Sociological research suggests a more complicated picture - that
despite the rhetoric of non-directive counselling, genetic counsellors do shape
the choices that parents – in particular women - make, while devolving the
responsibility for those fateful choices upon them. Nonetheless, what if some
prospective parents, in the light of their own value judgements about the worth
of different forms of life, take advantage of such techniques and decide
against having
children with certain conditions. Is this ‘liberal
eugenics’. I think not. Eugenics was a collective attempt imposed by a state to
improve the quality of the population, in a geopolitical context often seen as
a struggle between races. What we see today is something different.
Of course, in a sense, the very availability of genetic
counselling to parents considered ‘at risk’ of having children with certain
disabilities or medical conditions, with the availability of therapeutic
abortion, does indicate that some lives, potentially, are less desirable than
others. Undoubtedly many parents, given the choice offered by PGD, choose
against having children whose lives are likely to be painful and short because
of inherited diseases which are known to be single gene disorders – arising
from a mutation in a specific genetic site. But here is an example that
concerns to early-onset dystonia, a painful but not terminal condition, whose
genetic basis was discovered in 1997 and named DYT1. It appears under a happy
picture of Art and Wendy Kessler and their newborn baby Benjamin:[4]
Kessler, diagnosed at age 12 with early-onset dystonia,
a genetic brain disease that causes involuntary muscle movements and forces the
body into twisted, painful postures, refused to father a child at risk of
having the disease and the condition he described as a nightmare. Now, because
of the discovery of the DYT1 gene, genetic and prenatal testing, and a
groundbreaking procedure called preimplantation genetic diagnosis (PGD),
Kessler and his wife, Wendy, are the parents of dystonia-free Benjamin … the
first child ever to be born using PGD to prevent another life from being
burdened with dystonia…. [Kessler says] Wendy and I are elated…. Benjamin means
this is the end of dystonia in our family. It’s great!
I have, not accidentally, taken this example from the
website of the Chicago Jewish Community on line. The site informs us that
dystonia is one of several ‘Jewish’ genetic disorders – that is the term
adopted by many Jewish organizations, because of their high prevalence among
Ashkenazi Jews, although they are by no means exclusive to them. Jewish organizations in the United States
have been very active in campaigns and research to find, screen for and
eventually eliminate the genes for these disorders in their communities. Hence
the irony, for the critics, who brand this eugenics. But do these attempts to
eliminate such single gene disorders indicate that those born with such
conditions are deemed ‘lives less worthy of life’, less worthy of our care and
sustenance. I think not. Of course, as
research by Sarah Franklin and her colleagues shows, this is not a matter of
wanting ‘designer babies’. And there is no evidence to suggest that parents who
do have children with these diseases think their lives ore unworthy, or love or
value them less. On the contrary, it is precisely because of that love that
they strive to avoid more children having such painful and/or shortened lives.
Nor do I think that children born by such means will consider themselves, or be
considered by others, as in some way ‘less than human’ because they arise from
choice rather than chance, as suggested by the social theorist Jürgen
Habermas.(Habermas, 2003) Quite the reverse – as in the case of children chosen
to be ‘saviour siblings’ who are tissue matched so that they can donate tissue
to an existing child with a terminal disease. I think the ethical issue is
different. I don’t mean to make a cheap point, but in the context of the mass
letting die of millions of children, we can note that the procedures to produce
Benjamin cost the Kessler’s $20,000. Perhaps, it is not eugenics or the threat
to our species ethic that should animate our bioethicists, but this
differential value of life.
Private clinics in the US offer PGD services for a
whole range of conditions. The Institute for Reproductive Medicine and Genetic
Testing, for example, lists 57 such diseases on its website, from
Adrenoleukodystrophy to Von Willebrand Disease.[5] These include sex linked diseases, where PGD
is used to ensure that only male or female embryos are implanted, despite their
being no certainty that any specific embryo of the other sex will carry the
mutations for the disorder. In the UK, this area is regulated by the Human
Fertilization and Embryology Authority, which has to issue a licence to clinics to use PGD in relation to
certain conditions where the embryo is considered at risk of developing certain
serious conditions associated with great suffering, for which no effective
therapy is available. But the boundaries are fuzzy. In November 2004, the HFEA
issued a licence to University College Hospital in November 2004 for a form of
severe inherited bowel cancer. Familial Adenomatous Polyposis Coli (FAP) is a
very serious condition, leading to multiple colon cancers in early adulthood;
many of those affected have prophylactic surgery in their teens to remove the
colon. Few would argue with attempts to eliminate this condition though many
live into adulthood with it. But what about breast cancer – where the genetic
markers BRCA1 and BRCA2 are linked not to certainty, but to an increased risk
of developing cancer, around 70% as opposed to 10% - should PGD be used in such
cases to implant only male embryos. What about achondroplasia which arises from
an abnormality in a gene located on chromosome 4 –are short legs and arms a
condition that causes severe suffering and should be selected against? What if these choices were to be offered to
families with, say, a history of manic depression. These are certainly difficult
issues, but I don’t think we understand them through the rhetorical invocation
of eugenics. Rather they indicate the kinds ethical choices that are created,
not by our modern technologies of life themselves, but by the hopes we invest
in them. Drawing on a term used by Rayna Rapp, in her study of women facing
amniocentesis,(Rapp, 1999) I term those in these situations ‘ethical
pioneers’.(Rose and Novas, 2005) In their relation with their bodies, with
experts, with others in similar situations, and with their destiny, they have
to create new ways of understanding, judging and acting on themselves, and
those to whom they owe responsibilities—their children, their kin, their
medical helpers, their co-citizens, their community, their society. They are at
the frontiers of the practical ethical dilemmas that
will face more and more of us in the years to come.
In this future, more and more of us will have to make
such fateful decisions in conditions of considerable uncertainty. For genomic
research has identified the mutations for many rare and devastating conditions,
but has been far less successful in identifying genomic sequences that give
clear predictions about the likelihood of individuals developing any of the
common complex disorders – stroke, heart disease, diabetes and most forms of
cancer – let alone mental disorders. However genomic variations at the level of
single nucleotides have been identified, and can be tested for, that increase
the probability that the individual carrying them will develop a particular
disease – as in the BRCA mutations linked to breast cancer that I mentioned
earlier- but even then, probability is not certainty, and population data
cannot predict individual cases. Outside the rare conditions that I have
already discussed, the ‘gene for’ paradigm – one that sought the ‘cause’ of a
disease in one or two mutations in one or two genes – has largely been
abandoned in favour of a model of complexity, where susceptibility to a
disorder is the result of the interaction of multiple variations at many sites
in the genome, some of which are protective and some of which, in certain
environmental and other circumstances, may increase the risk of a disease
developing. In most cases, that is to say, susceptibility testing does not read
the implacable medical fate of an embryo, or of a born human being, in their
genes, but can suggest an increased risk of developing a disease, although
seldom when, how acutely, or with what consequences. This does not generate
fatalism and resignation – on the contrary, it adds the obligations of genetic
knowledge, genetic responsibility and genetic prudence to us ‘active citizens’
in the advanced liberal societies of the west.
Let me turn to consider another issue that has
generated much debate in the newly christened profession of ‘neuroethics’ – enhancement.
Some worry that we will soon be able to alter our moods, emotions, desires and
intellectual capacities at will though the use of smart drugs, without the hard
work of self on itself that is currently required. Leon Kass, Frances Fukuyama
and their colleagues on the US President’s Commission on Bioethics write:
The growing power to manage our mental lives
pharmacologically threatens our happiness by estranging us not only from the
world but also from the sentiments, passions, and qualities of mind and
character that enable us to live in it well… the creating of calmer moods and
moments of heightened pleasure or self-satisfaction that bear no relation to
our actual undertakings threatens to erode our sentiments, passions, and
virtues. What is to be particularly feared about the increasingly common and
casual use of mind-altering drugs, then, is not that they will induce us to
dwell on happiness at the expense of other human goods, but that they will
seduce us into resting content with a shallow and factitious happiness.
(President's Council on Bioethics (U.S.) and Kass, 2003: 266-7).
Prozac is the usual example here: Peter Kramer
introduced the term ‘cosmetic psychopharmacology’ when he suggested that some
of the patients who he had put on the drug had become ‘better than well’. Many
millions of people worldwide have taken Prozac or its sister SSRI drugs, and my
own study of psychiatric drugs shows that, in Europe, antidepressant
prescribing per 1000 population doubled from 1993-2002, and the use of SSRIs
increased tenfold.(Rose, 2004) Yet we do not seem to have witnessed a general
increase in geniality, well being, conviviality or any of the rest of it. In
fact, these drugs do not allow individuals to manipulate their moods at will –
they do so less markedly and less reliably than the older and rather un-smart
drugs such as alcohol and marijuana. Indeed they are not sold on this promise
but another, more familiar one – not to make yourself something new, but ‘feel
like yourself again’, get your life back, become the author in your own
narrative. It is not the novel ethic of enhancement but the familiar ethic of
authenticity – familiar from so many of our existing psychotherapies—that is
engaged here. The neuroethicists fear of shallow happiness in a pill has the
wrong target. And the image of SSRIs, like the minor and major tranquillisers
before them, has now shifted from ‘miracle pills’ to ‘bitter pills’ as they
enter the troubled zone of scandals, legal challenges, adverse effects and
evidence of dependence.
Recently concerns have shifted to “cognitive
enhancement” – pharmaceuticals that enhance mental functions. Harry Tracey,
publisher of NeuroInvestment, is widely quoted as estimating, in 2004,
that at least 40 potential cognitive enhancers were currently in clinical
development.[6] Ritalin,
a stimulant, is already widely used in the US by students who have not been
diagnosed with ADHD; Cephalon’s Provigil was developed for the treatment of
sleep disorders but may also increase alertness and mental energy; and drugs
initially developed for the treatment of age-related memory loss, ‘Mild
Cognitive Impairment’, and early Alzheimer’s Disease, may be used ‘off label’
to improve memory. But what is new here? Humans have been trying to enhance our
mental capacities for centuries - by eating brain foods, doing crosswords,
going to crammers, and indeed enrolling at the LSE. There is a massive market
in sales of nutritional products that claim to enhance our mental capacities.
Again, I think the ethicists are addressing the wrong question. Instead, we
should ask why, in the west, we have become 'psychopharmacological' societies.
The European market for psychiatric drugs in 2000 had a value (at
ex-manufacturers prices) of $4,741 million – up from $2,110 million in 1990 –
and in the US of $11,619 million – up from $2,502 million in 1990.(Rose,
2004) In many different contexts, in
different ways, in relation to a variety of problems, by doctors,
psychiatrists, parents and by ourselves, human subjective capacities have come
to be routinely re-shaped by psychiatric drugs. This certainly raises important
questions about how we configure the boundaries of the normal and the
pathological, the treatable and the acceptable. It does indeed raise questions
about the kinds of humans we want to be and the role of the market in this
reshaping of ourselves as ‘neurochemical selves’ But these aren’t going to be
resolved by an appeal to human nature, dignity, or a rejection of
artificiality. Neither humans not nature have ever been ‘natural’: we only need
to look at social and historical variations in such ‘natural’ phenomena as life
expectancy, morbidity, fertility and much else besides. An appeal to nature
doesn’t help us much - the limits of the natural are precisely what has been
shifted.
Perhaps what should most concern us with such drugs is
not enhancement but control. In the developed world, risk management and the
prudential principle reign supreme. Even without genomics, the most profitable
pharmaceuticals are those that treat, not disease, but risk – the statins for
reducing risk of coronary heart disease are the best known example. So we are
likely to see calls for psychiatric screening and preventive pharmaceutical
intervention based on risks and probabilities. Some of you may have read of a
proposal made recently by US President George W. Bush’s New Freedom Commission
on Mental Health.(Lenzer, 2004) They proposed a programme of widespread
screening of “consumers of all ages” for undiagnosed psychiatric disorders,
starting with the 52 million students and 6 million adults who work at the
schools. They coupled this with a programme initiated in Texas, where those who
were found to be ‘at risk’ by such screening were given preventive treatment
with psychiatric drugs even though they did were not currently in any sense
‘ill’. The Texas scheme was widely criticised, partly because of the financial
links between the politicians proposing it and the pharmaceutical companies who
part funded it and stand to benefit from it. Such preventive screening
programmes, which I think will be come more common, will undoubtedly expand the
remit of medicine and the market for the pharmaceutical companies. Such
screening in US schools, encouraged by various incentives, has been central to
the widespread diagnosis of Attention Deficit Hyperactivity Disorder and use of
Ritalin or Adderall. I worry less about the possibility of factitious
happiness, or enhanced cognitive capacities, and more about the apparent
acceptability of these programmes for presymptomatic diagnosis of risky
behaviour coupled with incentives or obligations to prescribe pharmaceuticals.
Where, then, do we stand on the implications of
biomedicine in the developed world? Many
of the promises and predictions that worried social theorists and bioethicists
have proved to be unfounded, or at least premature. As Nightingale and Martin
have argued, ‘biological knowledge derived in the laboratory is not easily
translated into useful clinical practices’ (Nightingale and Martin, 2004: 567):
many obstacles have to be overcome before advances in basic biological
knowledge generate new medical technologies. We can see this clearly in
pharmacogenomics - the promise of personalised medicine where a genomic test
would ensure that each individual would get the right drug in the right dose
for their precise condition and metabolism. It seemed that, very soon, if you
went into your GPs surgery and she diagnosed you with depression, she would
administer such a test before deciding which of the twenty or so
antidepressants to prescribe and at what dose, ensuring efficacy and avoiding
adverse effects. BIOS is engaged in research in this area, but it is already
clear that the claims for personalised medicine are exaggerated. At best, all
that a genomic test will do is place you in a risk group, not too different
from those already familiar from epidemiology and family history – you might be
in a group with a 20% chance or an 80% chance of responding well or badly to a
drug. This may assist doctors in initial choice of drug. It will present
opportunities for drug companies, who will market some drugs with the
diagnostic tests required to prescribe them. The costs to health services are
obvious, but the benefits to the patient are unproven.
Epochal thinking, utopian or dystopian pronouncements,
and dire warnings of slippery slopes don’t help us here – they should
themselves be part of what we study. This does not mean that nothing new is
happening. The beliefs, hopes, expectations, investments that we see all around
us are themselves significant of the centrality of health and illness to
contemporary politics, economics and ethics. Perhaps, as some believe, the
benefits of this high tech biomedicine for the few will ‘trickle down’ to the
many – but as with ‘trickle down’ economics, things don’t always work out this
way. No doubt, by the time some of these developments are translated into the
clinic, the medical possibilities will seem as routine and un-contentious as in
vitro fertilisation appears today, a far cry from the febrile debates over
‘test tube babies’ sparked by the birth of Louise Brown in July 1978.
Indeed there are signs that this message is becoming
evident to biocapitalism. Ernst and Young report that 2003 was a difficult
year, as “a more sober mood characterizes the [biotech] sector’s condition as
it matures”. (Ernst & Young, 2003: 1) The net loss of US biotech revenues
in 2003 increased by 71.2 % over 2002. Venture capitalists and life sciences
investors seem increasingly aware of the divergence between promissory
biotechnology and its substantive results. Frank Baldino, CEO of Cephalon,
writes that:
…the appeal of technologies that hold the promise to
lead to products in a decade had dwindled…. Over the past 25 years, since the
founding of Genentech, only a handful of companies have achieved
profitability…to garner the interest of Wall Street today, companies need to
have products in late-stage clinical development or very near the market.(Ernst
& Young, 2003: 2)
Promissory capitalism demands results in the short
term. And the absence of such results is likely to make the biotech industry
even less responsive to demands that it should direct some of its R & D to
the health needs in developing countries. This leads me back, in conclusion, to
the relation between the two universes that I pictured at the outset.
Of course, this picture was misleading – they are not
as distinct as might at first appear.
The two universes are, in fact, linked by multiple circuits of
collaboration, exchange and, of exploitation, also being researched in BIOS.
Circuits of tissues (the global trade in organs), of research (researchers
collecting DNA from populations in isolated regions in the search for the
genomic basis of diseases), of scientists and knowledge themselves (biomedical
science being a truly global activity). And, of course, they are linked by the
ways in which pharmaceuticals are licensed and exported from the developed to
the less developed world.
And while multinational pharma and biotech in the
developed world have not engaged significantly with the problems of the less
developed world, governments, NGOs and philanthropists have. To take just one
example, the Bill and Melinda Gates Foundation
has given more than $1.5 billion to projects focussing
on the prevention and control of infectious disease, notably though support for
GAVI – Global Alliances for Vaccination and Immunization – in its first five
years of operation, GAVI immunized a 4 million children against diphtheria,
tetanus and pertussis and more than 24 million against hepatitis B. The
foundation also made a $42.6 million donation to the Institute for OneWorld
Health, the first nonprofit pharmaceutical company in the United States, to
develop affordable cures for malaria, which kills more than a million children
each year.[7]
But, lastly, the less developed world is not passive;
competitive implications of developments in Asia are causing Western
governments and companies particular concern. The report of a UK government
mission to India in 2003 is headed with a quote from then Indian Prime Minister
Atal Behari Vajpayee: “Biotechnology is a frontier science with a high promise
for the welfare of humanity”: at that time there were 160 biotechnology
companies in India with combined revenues of US$150 million, driven by
developments in the healthcare sector; the industry was expected to grow to US
$4.5 billion by 2010. and to generate a million or more jobs. Singapore’s
revenues from biomedical manufacturing are projected to reach $7 billion by
2005. In China, world number 3 in terms of overall R&D spend by 2003, the
government spent about $180 million building a biotech industry from 1996 to
2002. In the next three years, this will triple. Despite or because of its one
child policy, China has an active sector of reproductive medicine, and IVF and
PGD is widespread. China is also a world leader in research on stem cells, with
its own set of lines, and is already involved in clinical trials. The Stem Cell Research Centre in South Korea
has guaranteed government funding of US$7.5 million for the next ten years. In
Asia, such developments are underpinned by long term government funding and
investment in infrastructure: they are in it for the long term.
Africa, of course, is the exception. But the fulcrum,
in biomedicine as in so many other areas, is shifting to the East. Not that we
should regard the economic or political regimes of these regions as inherently
more concerned with social justice or international equity. But maybe the highly individualistic concerns
of Euro-American bioethics might be offset by a deeper concern with collective
well being and the ethical problems raised by the morbidity of the many rather
than the lives of the few.
So will biomedicine transform society? Being a
sociologist, my answer of course is ‘yes’ and ‘no’. Or rather ‘no’, ‘no’ and
‘yes’ No: there will be no new Eden, no end to our human-ness, no posthuman
future. We will remain human, all too human. No: we cannot rely on advanced
biomedicine in its current corporate form to help put an end to the scandalous
inequities in global health. This will remain a matter, not for medicine, but
for politics. But yes, in a multitude of small ways, minor shifts, new choices
and dilemmas in our everyday existence, we are inhabiting an emergent form of
life.[8]
an
international and interdisciplinary journal of postmodern cultural sound, text
and image
Volume 3, August 2006, ISSN
1552-5112
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Notes