Between Treatment and Enhancement: ‘Vertical’ and ‘Horizontal’ Bioethical Issues
Speech presented at the International “Posthuman Politics, 6th Beyond Humanism” Conference organized by the Department of Cultural Technology and Communication of the University of the Aegean in Mytilene.
In the introduction I will present some cases while posing relevant questions about genetic anti-aging methods, genetic doping and the creation of normal children with pharmacogenetics methods. The reservations and criticisms I present on the respective methods move in two axes:
- a vertical axis – the interference in the fundamental level of human.
- a horizontal axis – the diachronic dimension of the potential impacts.
Therapy Interventions: Gene Therapy
In the year 1990, a four year old girl became the first gene therapy patient. Suffering from adenosine deaminase deficiency (ADA) which results in a severely compromised immune system due to the buildup of toxic waste products in lymphocytes, her white blood cells were removed and retroviral transduction performed to insert a functional form of the gene to correct the defect resulting in a normal life for what could possibly have been a terminal patient. Since that successful and safe occurrence of gene therapy, the idea of using this technique for a multitude of genetic disorders, both life-threatening and non-life threatening, became increasingly prevalent.
In another case published in the “Science” journal, three children suffering from metachromatic leukodystrophy, a disease that robs young children’s ability to walk and speak, were cured thanks to an innovative gene therapy. These children can now attend school regularly. The study is published together with the results of a corresponding method which when applied to three children appears to reverse a rare and severe genetic disease (Wiskott-Aldrich syndrome) which affects the immune system.
The Science Translational Medicine Review cites the case of an innovative cochlear implant with which Australian scientists succeeded for the first time to carry new genes to the ear of test animals suffering from deafness thus improving their hearing. The breakthrough paves the way for the treatment of other neurological and psychiatric disorders (Parkinson’s, depression).
By a simple DNA introduction, under gene therapy, those suffering from the rare “Leber Congenital Amaurosis” genetic disease show dramatic improvement in their eyesight, especially if treatment is done early. The method was applied to the eyes of four congenitally blind children, who regained their sight to the extent that they can now walk without assistance.
Examples are no longer few: In 2011 Scientists reported the first clear success with gene therapy to treat leukemia, turning the patients’ own blood cells into assassins that hunt down and wipe out their cancer.
A liitle girl, Νina, had a condition called severe combined immunodeficiency (SCID). She had been born without an immune system due to a genetic defect. It is also known as “bubble boy” disease, since people affected have to live in a sterile environment. In 2013 α year-and-a-half later, Nina is a happy little girl with a functioning immune system. She has gene therapy – and its latest improvements – to thank for it. SCID was the first condition to be treated with gene therapy more than 20 years ago. A virus was used to replace a faulty gene with a healthy one.
Rehabilitation interventions: Medical Robotics
Robotics and intervention in the brain, such as the robotic arms (Modular Prosthetic Limbs) with independent movement (of the Applied Physics Laboratory of Johns Hopkins University) and methods that restore touch by bypassing the conventional brain-limbs connecting pathways (University of Chicago), are in full operation.
The cases of two women, published in 2012, made sensation as they showed the potential of robotic limbs and their ‘chat’ with the brain. In one case sensors placed in the motor cortex of a woman, who was paralyzed from the neck down. Through special training she managed to move objects with a robotic arm and the power of thinking. In another case, researchers at Brown University implanted a chip in the brain of a quadriplegic woman, allowing her to move an arm with her thoughts in order to… enjoy her coffee. Last fall, was first announced, the case of a 32 year old man who became the first patient to walk with a bionic leg controlled by the power of thought.
The uncontrolled progress of science has led to the emergence of genetic mutation – or conversion – to humans, animals and plants. The existence of several diseases with a genetic basis (cystic fibrosis or congenital deafness) and experiments in embryonic and stem cells and the gene on chromosome 8, continuously create further ethical questions.
For example, are there acceptable limits on the attempt of genetic transformation of our world? The human motivation for genetic experiments seems to be the effort to overcome that which at times is considered socially incomplete (homosexuality, ethnicity, gender, smoking, obesity, alcoholism, mental deficiency). However, does the need prevails for therapeutic intervention in any physical and biological defect (such as creating organs for transplantation)?
The new fictional force
According to a developing problematic, the DNA, as the major “fictional” power, has replaced the explanatory role of the soul in the Christian ideology. Here appears a further similarity to the mediating role: while religion mediated between God and the world, science mediates between nature and people.
However, the relationship between science and capital cancels the similarity between science and religion, making science accountable in a very specific way: the relationship with capital means that science should constantly demonstrate that it moves towards profitable (in the broadest sense) directions.
Things are further complicated when we consider that genetics is not only a source of unfair inequalities, because we can conceive where improvement is an absolutely desirable and morally acceptable goal. We could easily imagine a redefinition of old age, especially in the current request and spirit of “good living” as a disease that needs treatment, or as a treaty that calls us to offer greater opportunities for personal wellness and empowering elders.
Questions of Personal Identity
However, the context of debate changes when it comes to interventions that go beyond the limit of the body, the “interface” of the skin, because questions of identity are raised. For example, in the case of diseases such as Parkinson’s, we would be possibly willing to accept that interventions that replace the organic elements that control movement do not particularly affect the philosophical question of identity.
However, if we consider the case of such cellular interventions for Alzheimer’s disease, things are different. There, we can reasonably assume that a radical replacement of cells may lead to questions of personal identity. In other words, if he could cure this disease through mass replacement of cells, the question would arise of whether the person remains the same after the restoration of the cerebral function.
On the basis of current experimental data of biology and brain science, there is every reason to believe that a stem cell transplant would radically change the character of the patient. In regard to the question of the patient’s personal identity, it is not clear whether a radical intervention of this type would result in the restoration of the prior personality rather than creating a new.
The requirement for beauty
The battle against old age emerged as a result of medical research to extend life, but it is not, at least yet, about a race for eternal life, but about prolonged youth.
This is one of the biggest industries of the western capitalist world, reinforced daily by beauty standards and, ultimately, social acceptance. In any case, what is considered good appearance formed through the particulars of every era and was always desired. However, one of the eternal values of beauty is youth, which, as a value in itself, makes old age synonymous with decay and withdrawal from active life. Consequently, the field of anti-aging has now obtain huge and lucrative dimensions which will soon escape the control of science.
As a sign of the “promise” that represents the improvement, just think of the obvious: that thousands of people are willing to undergo surgery to “fix” small or large imperfections of an aesthetic nature. The same people, in fact, consider this a natural extension of their daily grooming process and in effect not different from other interventions, such as body piercing or tattoos.
At the same time, interventions of this type are projected as something perfectly ordinary and indeed necessary, a commitment to improve oneself or something that can be done in the name of better “psychology” and balanced life. Here we find one of the most powerful arguments of this industry: the pursuit of happiness. If someone manages thus to improve the quality of his life, why not do it? If, for example, a nose plastic job can eliminate social anxiety or even depression, what difference does this intervention has in motivation level compared to the administration of antianxiety or antidepressant medications? Indeed, one could argue, a permanent solution is better than using drugs in perpetuity. Doesn’t this also show respect for the personal autonomy of the individual, as discussed above?
As this sector expands very fast, there are no clear ethical operational rules. But the crux of the problem in relation to aging, decay and pursuit of appearance lies elsewhere. Behind this ever growing need lies a social imperative that pokes and, or pushes people to these interventions. This is not in fact the need for social inclusion or improvement of the position in society or the quality of life, though often similar arguments are heard, but the desire for social and economic success, competition and intensity that characterize interpersonal and social relations of the modern capitalist society.
Based on the above we can see that the fundamental categories of this debate are substantially the following two: life and death. In an attempt to defeat death, the eternal and ongoing quest for the incorruptible, for fighting decay, biotechnology and science are driven to interventions in the fundamental level of the individual and of the human body. These interventions are included in one of the categories examined above (purely medical, rehabilitation, improvement on the basis of the requirements of the athletic performance, of beauty and youth).
In most, if not all, cases we see a transition from the medical to the non-medical application, which in turn raises ethical and philosophical issues which, at least at present, appear not to be able to anticipate the developments.
This has at least two consequences. Firstly, it does not allow the creation of a regulatory or legal framework that would regulate and set limits. Secondly, when we say that it morality does not ‘anticipate’ developments is like saying that we do not yet understand the true nature of these developments or their consequences. In other words, we are not yet in a position to judge what is or is not morally acceptable.
Latent standards and imperatives
These discussions are anything but abstract theoretical-moral in content. For example, an objection raised by some scholars, who remain skeptical as to what they consider explosion of ADHD diagnoses (ADD or AD / HD), is that these diagnoses along with a thriving industry of specialists and medications, are, in essence fueled by the dominant standards of normalcy and acceptable social behavior. According to this approach, the pharmaceutical treatment of the phenomenon effectively suppresses behaviors that are not only problematic but are characteristic of childhood. The number of Ritalin prescriptions for children and adolescents has tripled over the past decade, but not all users suffer from attention disorders or hyperactivity. High school and college students have learned that prescription stimulants improve concentration for those with normal attention spans, and some buy or borrow their classmates’ drugs to enhance their performance on SAT or other exams. Such is the case with Ritalin trying to change the biological composition of the child and not the parents, divorces, classes.
In an equally latently way, function the standards of mental predispositions or worldview, which are the psychological equivalent of the beauty industry. The beginning, at least in the West, can be placed in the appearance of the concepts of well-being and mental balance derived from the (selective) interest in spiritual and religious tradition of the Far East.
Part of this is the emergence of “positive thinking” as an imperative standard of behavior, an attitude which is not easily identifiable as an imposition or coercion, since it is associated with a requirement of positivity or euphoria. Of course, this requirement is intended to “cure” an intolerance to any form of distress (or even the “legitimate” concern on the issues of everyday life), which is treated more and more as a kind of sterile discomfort without further content or creative dynamics.
The tyranny of euphoria
The dilemmas here, are numerous and compelling. They relate largely to the difficulty of establishing an argument against the standard of “tyranny of euphoria” and in favor of a personal path to a desired mental state, which instead of relying on pharmaceutical aids would result from reflection, judgment and conscious overcoming of any problems. However, while uncontrolled positivity remains the dominant paradigm for improvement, such an argument will be treated uncritically, almost as a romantic support of misery.
The same difficulties weigh, in proportion, as well in the case of doping: how could an argument be established when the dominant model is, from every direction, this of maximization? Rivalry, as a fundamental characteristic, is eclipsed almost entirely by the imperative of victory.
From intervention to human-machine
Radically changing the terms of our vision, we see the case of doping mentioned above in terms of an understanding of the human body as an idealized body-machine. It is about a shift in the dominant paradigm of doping from the notion of a potentially detectable substance to the intervention on the body of the athlete itself. This shift is signaled, among other things, by a race of continuous improvement and better performance through interventions that may be either external or internal to the body of the athlete.
Regression of the natural
On the basis of the above, especially in improving athletic performance, a clear sense of the decline of “natural” is reflected. Referring, for example, to the scandal of champion cyclist Lance Armstrong, the philosopher Alva Noe asks us to reconcile with our “manly nature”. After an extensive reference to harnessing nature through human ingenuity and resourcefulness, he invites us to think that the man could no longer digest milk after having had domesticated the animals that produced it. So, writes Noe, the man “made a genetic modification to himself”. Noe will conclude with the following thought for the Armstrong case, and more widely the fruits of technology:
“Let us turn now to the case of Lance Armstrong. He is a pioneer. One of the greats. He did not win his races by himself. No. Like all of us who live in conditions of social integration, he created a structure based on other people and the creative and effective use of technology, the specialized use of biochemistry in order to […] achieve things that most of us will never succeed nor others had achieved before him”.
The case of Oscar Pistorius, now known for different reasons, is linked with the history of artificial limbs as a substitute for the able-bodied and a condition of social rehabilitation. The spirit that permeated the design and construction of these limbs was part of a broader culture of imitating nature and of matching the apparent to the real.
The lure of the mechanical model
Under the current requirements, conditions and aspirations to maximize the result, the mechanical model, directly or indirectly, will continue to set goals and methods. Moreover, as we have just seen, there are views that directly or indirectly aim to reduce the moral weight of the interventions, pointing to parallels and correlations with the past. Finally, areas such as the philosophy of technology indicate that even in the case of artificial limbs, the body ceases to consider them an alien extension as the development of skills assimilates the artificial element, making it familiar.
This creates a (first) tug of war between, on the one side, the moral depreciation in using enhancer substances in sport and in probability of inequalities and on the other, the horizon of meta-humanism (post humanism) where the body meets the machine. As in the case of genetic engineering, the main lines of research and questioning on the emerging field of post humanism concerns the distancing from a notion of invariant human nature and identity, in favor of a concept of a continuous becoming where external interventions become an inseparable element in identity formation.
The term “tug of war” also hides a second dimension of moral and social questioning. On the one hand it is clear that improvements, in the general sense, are being made in the name of merciless social imperatives. In this sense, it is part of the momentum towards normal. On the other hand, it is equally clear that the improvement, historically as restoration and most recently as the field of post humanism, invites us to reflect on the diversity, or even o autonomy.
A third dimension is perhaps the most difficult. If it is indeed the case that we drift away from the concept of a single immutable human nature, the question of choice opens before us, along with the one of responsibility. Right at this point we find the transition from medical treatments to improvement that we have seen above, that the use of medical methods and substances in non-clinical settings: athletes chasing the championship, businessmen, lawyers and students who want to maximize their mental concentration, parents who will soon be able to choose the, until now more or less random, characteristics of their children. To appreciate children as gifts or blessings is not, of course, to be passive in the face of illness or disease. Medical intervention to cure or prevent illness or restore the injured to health does not desecrate nature but honors it. Healing sickness or injury does not override a child’s natural capacities but permits them to flourish.
The defenders of enhancement are right to this extent: improving children through genetic engineering is similar in spirit to the heavily managed, high-pressure child-rearing that is now common. But this similarity does not vindicate genetic enhancement. On the contrary, it highlights a problem with the trend toward hyperparenting. One conspicuous example of this trend is sports-crazed parents bent on making champions of their children. Another is the frenzied drive of overbearing parents to mold and manage their children’s academic careers.
The libertarian philosopher Robert Nozick proposed a “genetic supermarket” that would enable parents to order children by design without imposing a single design on the society as a whole: “This supermarket system has the great virtue that it involves no centralized decision fixing the future human type(s)”.
Even the leading philosopher of American liberalism, John Rawls, in his classic A Theory of Justice (1971), offered a brief endorsement of noncoercive eugenics. Even in a society that agrees to share the benefits and burdens of the genetic lottery, it is “in the interest of each to have greater natural assets”, Rawls wrote. “This enables him to pursue a preferred plan of life”. The parties to the social contract “want to insure for their descendants the best genetic endowment (assuming their own to be fixed).”
Can post humanism be considered as diversity? It can, as long as it is possible for a society to be created that accepts the vulnerability of human nature, without seeking changed to everyone and prevalence of those who have proceeded to change.