The committee genetics and value of weakness
Gonzalo Herranz
department from Humanities Biomedical, University of Navarra
roundtable at seminar "Towards a Science with Conscience".
association Cultural Albores
Wyndham Old San Juan Hotel
San Juan de Puerto Rico, November 9, 2001, 10:30 a.m. to 12:00 p.m.
gradeThe final part of the text reproduces ideas contained in a session on respect for weakness.
1. Problems and promises derived from project Human Genome
Can the committee genetics be free of bias?
Is there, in fact, a path from committee genetics to eugenics?
2. Value of the damaged life Genetics
3. The humanizing value of the presence of the weak
Medical respect is a respect for the weak human being.
Rebuilding respect for the weak
1. Problems and promises derived from project Human Genome
At the beginning of the new century, marked by the completion of the project Human Genome (PGH), it has been repeated in a thousand ways that a new time full of promise has arrived, in which the innermost workings of man and the secrets of all life will soon be revealed.
But is this true?
Idea: coming of age in science: not all experts, but all aware.
Promises are part of reality, but also an element of negotiation. Science needs to win the enthusiastic support of the people, of politicians. It has become fashionable to promise.
The PGH has revealed many things. Its promises/realities are basically grouped into three fields:
To understand the structure and mechanisms of action of genes, their regulation, how their activity is switched on and off, how they are expressed, which epigenetic factors activate and deactivate them. A basic knowledge , with many applications.
Designing new molecules that act like drugs, very new, very effective and, uniquely, tailor-made.
Diagnose basic diseases Genetics. Possibilities of detecting structure anomalies, understanding how genes are transmitted to offspring. Undoubtedly, genetic diagnosis must be followed by treatments that help to cure or alleviate gene diseases. We already do many things, but we have a lot to learn.
While that golden time is unfolding, which will undoubtedly be a long time coming, we will have to go ahead with what is already in place and with the determination to incorporate, day by day, the data and techniques that the new Genetics will reveal. Will this progress lead to the committee genetics becoming, to an even greater extent than it is now, an instrument of internship eugenics, of eugenic programming of future generations?
It should not be. That is the proposal to be discussed on this roundtable.
In order to study the eugenic potential of the genetic committee of the future, it is necessary to start from a considered concept of what this committee is. Only in this way will it be possible to analyze how the genetic committee relates today to the eugenic mentality and internship , and to pose the decisive question: that of calculating which paths clinical geneticists will be able to follow when they are able to analyze large sections of the genome of human beings.
The genetic committee includes, in the first place, an informative component. Such information consists primarily of technical elements. It must refer objectively to the medical data relating to the disease detected: to the diagnosis and its reliability Degree , to the probable course in individuals and families, to the treatments available, to the prognosis, to the way in which heredity contributes to its development and transmission, and to the influence of environmental circumstances. But this information necessarily has ethical components: it can be requested by a patient or a family, because they want to know; but it can also be refused, because they prefer to ignore; it has to be administered with great circumspection, dosing it according to the response it provokes and the repercussions it acquires in family relationships, the confidentiality conflicts it arouses, the psychological, social or economic consequences it determines.
In Genetics clinic, the information is at the service of the genetic committee and is inseparable from it. There can be no genetic diagnosis without the associated committee . It is natural, because the patient or the family receives the necessary, objective and weighted information not only to know, but also to make decisions. Moreover, the genetic committee is both a psychological and ethical necessity, because, ordinarily, the patient or family, faced with a problem that overwhelms them, turn to the physician and ask him an almost inevitable question: Doctor, what should we do, what would you advise us to do, what would you do if you were in our case?
This is a shocking question. The trust of the doctor/patient relationship is manifested here with its maximum intensity. The ethical dignity and risk of the genetic committee lies in the fact that it is, by definition, guide and recommendation, proposal and never mandate. Only by recognizing his role as advisor that respects and financial aid, that informs and enlightens, will the physician be able to escape from the ever-present danger of abusing his power, which can become here the exorbitant power to decide on other human lives.
Therefore, the physician must diligently and finely investigate the beliefs of his patients, and must fill in the clinical history of his patients with the "history of values". In this way, he will be able to respect their freedom and conscience in a delicate way, and refrain from imposing his own convictions on them, as stipulated in article 8.1 of the Code of Medical Ethics and Deontology.1.
In a classic definition of committee genetic, coined in 1974 by Fraser2it is rightly stated that, in offering the genetic committee , the geneticist "must help the patient or family to choose the course of action that seems to them to be most appropriate in view of their ideals and taking into account the risks involved. The geneticist must act in accordance with that decision". This leads us to ask
Can the committee genetics be free of bias?
For some, this image of the genetic committee is a fiction, an unattainable ideal. They claim that committee is always imbued with subjectivity, not because physicians do not want to pay due respect to individuals and their freedom to decide with the necessary information, but because it is part of the very structure of the act of counseling that the counselor occupies a position, if not dominant, then at least directive, which cannot be freed from the counselor's personal convictions and beliefs.
And yet, when dealing with the ethics of the genetic committee , it is repeatedly insisted that it must be offered to patients in a neutral state, in the form of pure data , free of judgments or prejudices, Exempt of directivity, because only in this way will the patient be able to decide freely. In the clinical internship and in ethical reflection, expressions such as non-directive opinion, non-judgmental opinion, committee neutral and other similar expressions are commonly used, which are self-justifying both for their intentionality and for their civil service examination to other, historically more primitive, forms of genetic services. In the Genetics of earlier times, tyrannical and dogmatic rather than paternalistic, physicians did not offer advice: they acted as eugenicists from different cultural or political traditions, and imposed their decisions in the form of court orders, coercive rulings, racial hygiene practices, or the like.
Although things have changed a lot, it cannot be forgotten that today, in spite of the best intentions, under the label of committee there are diverse ethical realities circulating, which could be grouped around two basic prototypes.
In one, there are many clinical geneticists who, with formal and external respect for the autonomy of patients and families, obtain the consent of both to perform the genetic diagnostic tests that they themselves determine; and it is they themselves who interpret them and who inform their patients of the treatments that they consider advisable for each diagnosed entity. And, in the case of prenatal diagnosis, they have very definite ideas about when the diagnosed conditions are tributary to eugenic abortion and when corrective or rehabilitative therapy can be applied. The physician thus adds to his status as an expert in Genetics the power to judge the quality of the lives, present and future, that suffer under the weight of the genetic error.
At the other extreme are the clinical geneticists who make a literal interpretation of the theory and the internship of the non-directive committee to the detriment of the patient's autonomy, and who limit themselves to transmitting data, to offering empirical, scientific, factual, neutral information, free of any ideological or ethical bias. Here it is up to the patient to set the values and decide what fits in with his concept of what is good or the good life he wants to lead. He evaluates the treatment alternatives and chooses the one that suits him best. The doctor/patient relationship then produces what Dan Brock has called the division of functions: the doctor provides the science and the technique; the patient, the ethics.3.
It remains, finally, to consider Clarke's radical critique of the concept of non-directive genetic committee .4. Clarke states that, in a society in which eugenic abortion is authorized by law, genetically neutral committee is not possible: society, through its permissive laws, has overwhelmingly sided in favor of abortion in those cases in which prenatal diagnosis discovers some subject abnormality. The authorization for eugenic abortion is, at internship , a blank authorization, since no one has bothered to determine which genetic disorders are susceptible of being "remedied" by means of eugenic abortion. Although some legislations - the Spanish5for example - have decreed the establishment of an updated list of genetic or hereditary diseases that can be detected by prenatal diagnosis for preventive or therapeutic purposes, no one has bothered to set limits on the discretion of physicians and parents. It is as if the State did not want to get involved in the protection of genetically damaged life and left the matter in the hands of private individuals.
But the opinions of physicians and parents can clash. There are marked differences between geneticists and physicians in the way and the content of the information they give to parents. Theresa Marteau studied the differences between specialist nurses, geneticists and obstetricians in the way they present abortion as a priority solution to a positive result prenatal test Genetics and observed a more strongly interventionist tendency among the latter6. On many occasions, obstetrics services and Genetics do not provide information on the possible treatment options: it is not explained to patients that they can refuse the more ethically and psychologically aggressive possibility of terminating the pregnancy in order to opt for the more positive experience of continuing the pregnancy and letting nature take its course.7.
As the scientific quality of information improves and the decision-making process becomes more humanized, there is a statistically significant tendency in recent years to opt for the continuation of the pregnancy and to reject its termination.8.
It cannot be denied that it is possible to give genetic committee in ethical respect for persons and genetically damaged human life. But this requires on the part of the counselor a very intense and sincere effort to inform his patients of the reality without exaggerating or diminishing it, to give them time to calm down and reflect, to clarify doubts and alleviate emotions and anguish. The counselor must strive to free himself from his interventionist prejudices, often linked to technological and economic biases and, what is more difficult, to overcome his judgments on the quality of life, on the socially tolerable burden of handicap, and the possible prejudices that tend to assign to the genetic defect the negative value of a professional failure.
These considerations force us to ask the question of whether or not
Is there, in fact, a path from committee genetics to eugenics?
The question is a real challenge, as there is no data to answer it and it is necessary to make the most rational possible assumptions about the possible directions that the clinical Genetics has taken and can take.
A procedure, of much debated validity but which financial aid to reveal trends, to calculate consequences and to imagine the future is the slippery slope argument. In relation to the possibility that the genetic committee may lead to eugenic attitudes, the argument could be formulated as follows: if the internship of prenatal or preimplantation genetic diagnosis is considered acceptable to prevent the appearance of offspring that may be affected by very serious, painful diseases that lead to early death, it is inevitable that with the passage of time it will be considered correct to demand that the procedure be applied to less serious diseases. It will not be many years before, because of the satisfactory results, the growth in supply and the promise of freeing families and humanity from genetic diseases, it will come to be considered that it would not be ethically correct to object to the internship of genetic tests that do not detect diseases, but merely a predisposition to suffer certain types of cancer, cardiovascular diseases, or psychiatric disorders. And this, even if there is no full certainty that the individual tested will suffer from the disease, or at what Degree and at what time he or she will be affected by it.
The slippery slope argument can be stretched to include irrational or capricious components of radical eugenics, such as the diagnosis of traits that are not properly pathological, related to behavior, character or sexual orientation; the screening of embryos or fetuses to manipulate them for biological or psychological perfection, and the like. The conclusion that could be drawn from the argument is not difficult to draw: if we do not want to go to such capricious or degrading extremes, it is necessary to prohibit genetic diagnosis.
Undoubtedly, the slippery slope argument is often refuted by its internal inconsistencies, by the lack of empirical evidence demonstrating its plausibility beyond reasonable doubt, and by its pessimistic character that does not believe in the ability of human society to establish a rational boundary between what can be permitted and what is firmly forbidden.9.
In reality, the only way to verify or falsify the slippery slope argument is to let time go by and observe which of its predictions are fulfilled and which are not. In order to do so, it will be convenient to permanently scrutinize the signs of the times.
2. Value of the damaged life Genetics
As I have already pointed out, the diagnostic possibilities provided by the deciphering of the human genome will not be accompanied in the coming years by a proportionate development of the treatment of the disease Genetics. This may lead to a marked expansion of genetic abortion.
Permissive abortion legislation has included eugenic abortion linked to prenatal diagnosis as one of its most indisputable and even reasonable indications. In many clinical Genetics institutions, the "point and shoot" attitude of detecting and eliminating genetically damaged life is taken as natural. It will take years for gene therapy to arrive and for "detect and cure" to be practiced. In addition, preimplantation diagnosis has opened up the possibility of selecting embryos in vitro, to reject the damaged and accept what receives the guarantee of quality Genetics. A possibility that, almost inevitably, follows the law of increasing indications: the initial project of applying preimplantation diagnosis only to lethal or serious genetic conditions on a restrictive list, has gradually been extended to late onset diseases or to situations of risk of cancer. The aspiration to have genetically healthy children is gaining more and more ground in advanced countries.
Social tolerance of genetic error is decreasing. Take the example of Down syndrome, that very special and humanizing disease: we see fewer and fewer children affected by trisomy 21, which is a logical consequence of the fact that, in some countries, seven out of eight women with trisomic fetuses choose to have an abortion.10. Quality of life criteria; social contempt for avoidable genetic defects; the aspiration for a child, if not perfect then free of biological or intellectual defects, capable of competing in an increasingly demanding world; employment and insurance discrimination against victims of an endowment Genetics that predisposes to diseases of various kinds subject: all these factors tend to create in today's society a diffuse eugenic aspiration which, over the years, may evolve into an intolerance of handicap and a reinforcement of the demands for biological perfection. A few years ago, a report of the Royal College of Physicians of London presented an economic study that compared, in data , the cost of abortion and the specific expenses for the care of any associated malformations and the special Education of children with trisomy 21, and concluded that the systematic screening and abortion of fetuses with Down syndrome was an intervention with a very effective cost/benefit ratio.11.
The eugenic message is being administered in small desensitizing doses. The media speak with increasing frequency of the scientific brilliance and precision with which serious problems are solved, and present as a marvelous combination of technical skill and compassionate ingenuity the sacrifice of some human beings for the benefit of others.
The thing does not take the aggressive and fanatical air of the old eugenics of the first half of the twentieth century, but softer and more civilized forms. (Meter here the JME supl 2001 eugenic abortion).
The story of the Nash family went around the world as a great triumph of science: the life of a girl suffering from Fanconi anemia could be saved thanks to the transplantation of umbilical cord cells from a baby brother who had been gestated for that purpose. Behind the story, and in small print, was the hard fact that this sibling was selected, as an embryo, out of fifteen: the other fourteen were discarded because they either carried the Fanconi anemia gene, or were not an ideal immunological match for their sick sister.12.
In this way, eugenics, as a compassionate instrument for the elimination of suffering, consolidates the rejection and social eviction of the disease Genetics and its victims, at the same time as it raises eugenic abortion to the status of a priority solution and, even, obligatory from a social-ethical perspective.
There are, therefore, unflattering prospects: today's society looks favorably on the applications of eugenics. But it would not be fair to limit these considerations to negative premonitions. There are also signs for hope. Let us look at a couple of examples, one born of private initiative, the other of a democratic Parliament.
A few years ago, in a report of CERES, a prestigious British organization of Consumers for the Ethics of research, it was pointed out that the normal language of rights and duties is, in this field, insufficient, since the dialectic of rights discriminates against the weak and those harmed by the disease Genetics. This report pointed out that the power of physicians is still very strong, that today's patients are still very submissive to the doctor's advice, and that this is very true in the case of genetic services, where decisions are very difficult to make. CERES' report added a moral lesson management assistant, when he warned that changes in society's moral values tend to be reflected in many ways, particularly in the form of resource allocation; that many people with genetic defects live fully satisfactory lives to the extent that they are offered some practical supports, which if lacking can turn that handicap into a social failure; therefore, society was obliged, before assuming that handicapped people want to be changed as determined by experts, to ask the victims of the disease Genetics and their caregivers how they would like society to change to be a little more accommodating to their needs. Externally imposed solutions to partial problems can increase the tragic barriers of stigmatization and rejection of the many disabled people who cannot benefit from them. He asked report to include in the cost-benefit calculation of planned interventions a critically important factor: the risk that society will become less tolerant and less willing to help people with impairments.13.
Philosophy plenary session of the Executive Council For its part, the Norwegian Parliament took a step forward in genuine social policy when it pointed out in its report that the ideology of the Welfare State, which ensures equal rights, duties and opportunities and which forms the foundation of a well-integrated society, must give people with genetic impairments a natural and rightful place in society. It indicated to the Government that its priority goal in relation to persons with disabilities was to ensure maximum participation and equality for them, and that a strong concept of equality, without discrimination on the basis of intelligence or physical appearance, is a fundamental part of achieving equal rights. The Norwegian parliament recalled that all human beings are equal, whatever their personality, heredity or lifestyle; that all suffer from genetic mutations, but that, despite these, every individual has the right to a full and meaningful life that cannot be dictated by others. Society, by virtue of the principle of solidarity, should welcome everyone and offer everyone the possibility of being a valued member of it.
But the Norwegian Parliament did not stop at mere proclamations: it determined that the woman or couple, after having received a competent and humane genetic committee , and if the fetal disease was not lethal, were obliged to go to contact with families and staff non-physicians who had experience in caring for patients with such a handicap subject . And it established that these principles should apply regardless of whether the diagnostic tests had been carried out before or after the twelfth week of pregnancy.14.
3. The humanizing value of the presence of the weak
It has been said that the most fruitful and positive element, both of the progress of society and of the Education of each human being, consists in understanding that the weak are very important.
Chesterton affirmed that the most brilliant moments in history were those few in which men agreed agreement to recognize that all human beings, absolutely all, are, we are, wonderfully equal, unrepeatable, endowed with a singular dignity. This only really happened with the advent of Christianity and, in the desire, with the revolutions of the 18th century.
It is not easy, however, to live this doctrine. Despite two millennia of Christianity, it continues to encounter resistance to being practiced within each one of us and within society. And today, as I said before, we are witnessing a rapid deterioration of what has taken so many centuries to conquer and affirm. Today, in many places, the weak are the losers.
In the Christian medical tradition, being weak was degree scroll sufficient to merit qualified respect and protection. Today, in the competitive environment of libertarian and individualistic ethics, being weak is a stigma for marginalization or withdrawal. Many physicians, forgetting their vocation as protectors of human life, try to rationalize the elimination of the weak and do not hesitate to change the aims of medicine. Medicine is no longer only there to prevent and cure disease, alleviate pain and rehabilitate the handicapped: it is also there to maximize well-being, enhance psychoneurological power, take care of bodily aesthetics, create new hedonic lifestyles.
In the new trend, the notion of the sacredness of human life is replaced by that of quality of life. It is intended that the life of each individual should have a certain minimum quality, below which life would lack dignity, would be an erroneous life, unworthy of being lived, susceptible of being eliminated.
To such a mentality, we must oppose the message of respect for life and, more specifically, for debilitated life, as a fundamental ethical value in medicine. In medicine, respect for life is indissolubly linked, on the one hand, to the existence of illness, that is to say, to the essential fragility of man, and, on the other, to the limited, incomplete nature of therapeutics. I will then show some examples of how respect for the weak is scorned in present-day medicine. And I will conclude with some considerations on how to rebuild medical respect for the weak. ###
Today there is much talk of respect as a core element of biomedical ethics. All the documents in which medical ethics has crystallized since the Second World War, i.e. after the Declaration of Geneva, give respect a central position in the moral conduct of the physician. In Codes and Declarations it is mentioned again and again: respect for the secrets entrusted to the physician on the occasion of his meeting with patients; the utmost respect for human life from the moment of conception and respect for the integrity staff of the patient.
What does the ethical respect imposed by the professional deontology of the physician consist of? Much, and quite disparate, has been said about respect in philosophical ethics since Kant. We have, in Medical Ethics, magnificent programs of study on the elements of medical respect and the different senses in which the concept is used by the medical profession. Simplifying things a lot, we can accept that the respect most congruent with the Ethos of Medicine is a basic moral attitude of the physician that allows him to discover and respond to the moral values enclosed in people precisely in the decisive circumstance of their illness. Both the abundance and the quality of the physician's professional moral life depend on his ability to perceive these values. The physician who cultivates respect has the sensitivity and judgment to discover, in the presence of each of his patients, the dimensions of his service. On the contrary, the lack of respect makes the physician obtuse to the ethical problems of medicine and rude or blind to the needs that each patient presents. Respect prevents the physician from hiding parts of reality and capriciously assessing conflicting values or manipulating the ethical needs of patients. Respect, finally, allows the physician to provide his services to the patient with dignity, not because the patient can impose such answers by force, but because the respectful physician bows to the value he recognizes in others, in a gesture plenary session of the Executive Council of intelligence and professionalism. In the Hippocratic tradition, respect is of a purely ethical nature and has little or nothing to do with the legalistic submission to the patient's autonomy about which so much is written today.
Medical respect is a respect for the weak human being.
Genuine respect for human life impels the physician, in the first place, to be an expert in perceiving it under the pleomorphic appearances in which it presents itself, to discover it in the healthy and in the sick; in the elderly and the terminal patient as well as in the child; in the embryo no less than in the adult at the height of its fullness. In all cases, it has before it human lives, enjoyed by human beings, all of whom are, irrespective of their legal rights, supremely and equally valuable. Whatever these human beings may lack in size, in intellectual wealth, in beauty, in physical fullness, all these, including all their deficiencies and handicaps, are made up for by the physician with his respect.
This is a constant of the physician's work . He does not have to deal with the healthy. To him go the sick, the handicapped, those who live the crisis fearful of losing their vigor, their Schools or their life. The physician is always surrounded by pain, deficiency, incapacity. The lives he encounters are painful or decayed lives. His respect for life is respect for suffering life. His proper role is to be the healer and protector of weakness.
This idea is very clear to the physician who follows the Hippocratic tradition. Respect for all patients without distinction was included in the Declaration of Geneva precisely in a clause of inexhaustible ethical content: the one that enshrines the principle of non-discrimination, by virtue of which the physician cannot allow his service to the patient to be interfered with by considerations of creed, race, social status, sex, age or political convictions of his patients, or by the feelings that patients may inspire in him, and he undertakes to provide all of them equally with a competent attendance .
But reality seems to deny that physicians are willing to comply with such a lofty commandment, since there are many who cynically violate it or consider it to be of an unattainable moral stature. For this reason, it should be emphasized that the prohibition of discrimination is an absolute precept, which includes all human beings without exception. In other words, the right to life and health is the same for everyone, it is possessed by the simple fact of being human. The physician does not discriminate. He does not submit to the strong man because he has the power to demand his right to be respected, or disregard the weak man because he lacks strength and rights. He treats and serves everyone equally, not because he is an activist of political or social egalitarianism, but because Withdrawal, in the face of the fragility that disease creates in everyone without distinction, to take advantage of his position of power in front of them.
For those of us who fight for respect for life, the letter and spirit of the Declarations of Human Rights and of the Charters of the Rights of the Sick are clear and do not admit any attenuation. We consider unethical the conduct of those physicians who select their patients, who discriminate among them, who accept some and reject others, who care for some and abandon others. The ethical tradition admits, however, not exceptions, but priorities within the rule of non-discrimination. One, for example, is created by the status emergency. The physician must first attend to the urgent case, the one most in need of financial aid. But this is a technical reason, since all patients are equally worthy in terms of their dignity. Another is the one that orders the patients according to a scale of weakness, in order to give more attentive and solicitous care to the one who appears more seriously damaged by the disease.
Today, the appreciation of weakness is at a low ebb. The medical profession, born precisely as a human response to the vulnerability of mankind, seems to be disinterested, under the influence of the powerful economic and political factors of state medicine, in the pain and handicap of the weak and allows itself to be dragged into an alliance with the powerful. For this reason, it is worth reconsidering in some depth the ethical value of weakness and suffering.
The doctor, in each of his encounters with patients, is faced with a challenge: to recognise in the suffering humanity before him all the dignity of man. Illness tends to eclipse dignity: it hides it and sometimes even destroys it. If being healthy confers, in a certain way, the capacity for full humanity, on the other hand, being ill means, in a thousand different ways, a limitation of the capacity to become, or to remain, fully human.
A serious, incapacitating, painful disease, which undermines our humanity, does not consist only of molecular or cellular disorders: it also constitutes, and mainly, a threat to our integrity staff or a permanent limitation of it. It subjects us to test as men. We should not forget this when being, or caring for, ill. The Hippocratic tradition, enriched by the Christian ethos, saw in the breakdown of humanity that is being sick the root of the fundamental mandate to use all available means to restore the sick person to human wholeness and health, or, at least, to alleviate as far as possible the consequences of that threat. The physician acts on behalf of and on behalf of mankind to save and relieve the suffering person. Often, the medical attendance cannot be reduced to a mere technical-scientific operation, but must contain a projimal dimension, it must be a response staff to the threatened staff of the sick person.
Res sacra miser. With this denomination of Christian-Stoic origin, the special status of the sick person in the field of tensions of human dignity has been expressed in a magnificent way. It beautifully translates into medical language the general notion of the sacredness of human life. When the human condition of the sick person is considered in this light, we recognize the inviolability and, at the same time, the neediness of the sick person and the linked responsibility of the healthy person towards the sick. Respect for the sacredness of the sick person does not render him intangible, but impels us to pity, to compassion, to make him the object of active love.
Always, then as now, there have been certain mentalities blind to the ethical value of weakness. The philosophies of power and vitality, ancient-pagan or modern, have always manifested their contempt, sometimes disguised as compassion, for the sick and the weak. Nietzsche, who today counts among the yuppies more disciples than it seems, by elevating to the category of general principle the will to health and life, established that the sufferer is not a res sacra, but a res detestabilis. The instinctive and vital will of the healthy man expresses itself, before the sick, not in respect and consideration, but in contempt and rejection. Conversely, attention, care, compassion and loving service for the weak and the small belong for Nietzsche to the morality of slaves, to the morality of a decadent humanity, impoverished in its instincts.
I think that there is a specific dignity of the patient that deserves special respect subject . One can speak of a specific dignity of the patient due to the fact that the human dignity of the sick human being is threatened. The specific dignity of the patient, that is, of the sick person who comes into contact with a physician, stems from his legitimate demand for protection of his precarious humanity, from his human right to recover as much of his integrity as possible staff. The physician's respect must be proportionate to this need: the patient has the right to the physician's care, to his time, to his ability, to his skills. And, throughout the course of the doctor-patient relationship, while the physician fulfills, in the name of humanity, his healing official document , he must maintain what I like to call a binocular vision of his patient. He must maintain a constant awareness that he is dealing with a human being, that the doctor-sick person relationship is a person-person relationship, a subject-subject relationship, an I-thou relationship. But, at the same time that the patient demands to be accepted seriously by the physician as a person, he needs to be examined and considered as a disturbed biological object. The patient can never be reduced to a collection of disarranged molecules or bewildered organs, or as an enigmatic diagnostic problem or a simple opportunity for therapeutic essay . But he or she is those things and, at the same time, a person.
Therein lies the greatness and the risk of medical respect. There is an inevitable and necessary reification of the patient required by the scientific structure of medicine. It is necessary that in the course of the doctor-patient relationship there is a greater or lesser shift from the main I-thou relationship, i.e. from the human, interpersonal plane, to an I-that relationship, when the patient is conventionally converted into an object of observation and scientific-natural manipulation, by which the physician tries to obtain an exact knowledge , goal, purely scientific-natural of the pathological process and of the corresponding treatment. The naked body, the object of physical exploration and instrumental invasion, symbolizes this element goal in the doctor-sick person relationship, which, by its very nature, demands the most complete disconnection possible from all subjective considerations. The physician could not be a good physician if he did not do things this way.
The formidable progress of modern medicine with its incredibly effective diagnostic and therapeutic methods has made this aspect even more evident and luminous. For this reason, we must be on our guard against the temptation of anti-intellectualistic pessimism, of the jeremitic premonitions of those who speak loudly of a technological dehumanization of modern medicine or of the factory-like structure of today's hospitals. This forced reification of the patient constitutes for many, who are themselves poor in humanity or who have already lost their binocular vision of medicine, a temptation to deprive the patient of human dignity. But, deep down, the use of technological instruments in medicine is a prodigious manifestation of humanity, a lofty ethical act, full of application. Unfortunately, one sometimes hears well-meaning criticisms against the cold technology of modern hospitals and the apparent distancing of the physician when he is separated from his patient by many devices and many collaborators. It is said that all this has made medicine lose its humanity.
Today, as in the past, an effective medical attendance is only possible when the patient trusts the physician. But today this trust is not based primarily on a certain subject sympathy of the physician, on his humanity in the popular sense, but rather on his scientific objectivity, on the reliability of his knowledge, on his skill, on his familiarity with the accepted methods of treatment. There is thus the apparently paradoxical fact that the maximum of subjectivity, trust, is supported by the maximum of objectivity, that is to say, by the scientific reliability and the skill and skill of the physician. It is necessary to dispel the false confrontation between skill technical, experience and science of the physician, which must necessarily be objective, and his human, character and ethical qualities. Precisely the true suitability and authority of the physician consists in the meeting of both fields of skill, which should be inseparable in the good physician. Ethical insensitivity and therapeutic botch-up are just as much a blemish, in terms of medical disrespect, as therapeutic botch-up.
But having clarified the previous point, it must be recognized that there are many physicians who today have decided to ally themselves with the powerful and have ceased to respect everyone equally. To justify their disrespectful behavior, they need to disguise it as artificial, artificial respectability. More than eighty years ago, Chesterton wrote with his characteristic shrewdness that, in the modern world, Science serves many purposes, and that one of them is to provide long words to disguise the errors and evils of the rich. These long words - Chesterton gave the example that if it is a rich man who steals, he is not a thief, but a poor victim of kleptomania - have a respectable appearance. They are words we are all familiar with, such as quality of life, health for all or technological imperative, all sounding fine, modern, of noble academic birth, until it is discovered that they are serving as a cover for inhuman business.
The radical application of the concept of quality of life leads, for example, to the desperate conclusion that there are lives lacking in quality and so overburdened with weakness that they are not worth living and, consequently, must be eliminated.
The notion of health as a state of perfect physical, psychological and social well-being to which everyone should aspire leads to consider living with limitations as a failure, which is the only true and real health attainable in this world.
The technological imperative is becoming an end in itself, even if the applications of new techniques sometimes serve only to humiliate or destroy human beings.
Many physicians have placed themselves at the service of the powerful to the detriment of the weak. They have allied themselves with fertile parents to eliminate, through abortion or neonatal infanticide, children with malformations or with the modern and incurable weakness of being unwanted. They have allied with infertile parents to create for them an ardently desired child through assisted reproductive techniques. It does not matter that the price is a hecatomb of embryonic siblings, sacrificed as if they had no destiny staff in the world. They sterilize deficient girls in order to forcibly expropriate them of the possibility of becoming mothers, the noblest human capacity they still retain, and thus reduce them to the condition of sexual objects at the disposal of the first aggressor. In conclusion: some doctors have become agents at the service of the strong to expropriate the weak of their remaining human dignity.15.
Let's look at a couple of significant examples of how these physicians act.
The first one alerts us to the risk that, under the appearance of a cutting-edge biomedical project , the transplantation of embryofetal cells and organs, a regression to a new form of cannibalism is hidden. It started with the effects produced by certain fetal neurons implanted in the brains of senile rats: the old animals seemed to remember better and learn faster. That opens the way to treat millions of elderly people with senile dementia! Other fetal neurons are able to reconnect the ends of the severed optic nerve: exaggerating the matter a lot, it was said that this will allow refund to restore sight to some blind people. To treat certain blood diseases, it is more immunologically advantageous to transplant hematopoietic tissue from fetal liver than to transplant adult bone marrow. We are assured that embryofetal tissues will remedy many diseases and will be more important in medicine than antibiotics or psychotropic drugs.
In the face of so much promise, human embryos and fetuses are seen by some as promising banks of tissues and organs for transplantation, but very few have asked themselves about the ethical consequences of the utilitarian exploitation of these human beings. The new applications demand high quality for the materials used.
But, in any case, there are very few anencephalics. For this reason, there are now plans to conceive fetuses in order to abort them. This will make it possible to produce tailor-made fetuses, which have undeniable advantages over the bulk fetuses offered by fetuses aborted in any clinic. A news item, published last August in the Wall Street Journal, stated: "A woman, whose father suffers from kidney failure, has order to be artificially inseminated with the father's sperm to abort the fetus in the third trimester and donate the fetus' kidneys to her father. Doctors believe that the tissue compatibility would be almost perfect."
We see how the technological imperative transforms some scientists into lesser gods. It amplifies their power and, with it, their capacity for moral error. It exalts them to the point of placing them among the inhabitants of the pagan Olympus, but assigns them the place of Saturn, the god who obtained his strength by devouring his own children.
My second example is intended to show how the obsession to apply the advances of science causes in some physicians an acquired intolerance to weakness. Prenatal diagnosis is becoming, thanks to the screening of the weak, a shooting contest on moving targets, where the "point and shoot" rule prevails. This is clearly demonstrated in the case of prenatal diagnosis of albinism. Thanks to the ingenious procedures of Genetics Biochemistry we are learning more and more about the different varieties of this disorder. At the same time, the procedures, no less ingenious, that allow albinos to adapt to their deficiency, so that they can lead a normal life and work in normal jobs, continue to improve. Of course, they will never be able to excel in certain activities, but it seems that thanks, among other things, to their superior use of the report, they can reach higher social and economic levels than their normally pigmented brothers. A method for prenatal diagnosis of albinism has been developed. Some clinical geneticists are not resigned to the new technique being left out of the panoply of eugenic abortion. And since the selective elimination of albinos is unlikely to be accepted in temperate Western countries, they are offering the new procedure to tropical countries, where the sociocultural, ocular and skin problems of albinos seem incompatible with the dignity due to a human life.
The elimination of the weak seems to have become the dominant passion of some scientists. I believe that with the same tenacity we must spread our message of respect for weakness.
Rebuilding respect for the weak
It is evident that the weak have few true friends and this may be due to the fact that today very little is thought and written about the dignity of the weak. Perhaps there are very few medical schools in the world that dedicate at least one class hour in some corner of the curriculum to teaching the ethical significance of weakness. It is in everyone's interest to develop the theory and the internship of respect for weakness, to collect ideas and experiences on this topic to go around talking about it.
It is necessary to explain and enrich, for example, the doctrine that I have summarized on outline . Not long ago, the French National Ethics Committee for Life and Health Sciences, committee , published a declaration condemning the performance of experiments on patients in a chronic vegetative state. In it, the committee made a strong defense of sick human beings and accorded their weakness a high ethical value. Among other things, the report of the committee said: "Patients in a chronic vegetative coma are human beings who are all the more entitled to the respect due to the human person because they are in a state of great fragility. They may not be used as a means for scientific progress, whatever the interest or importance of the experiment that does not aim at improving their condition". The concept of the direct proportional relationship between weakness and respect is expressed here with precision: the greater the weakness of the patient, the physician must respond with greater dedication, with more careful attendance , with the most scrupulous rejection of any manipulation or abuse.
Finally, it is necessary to offer a serious philosophical justification for the phenomenon of human frailty and biological handicap, that inevitable companion of human life, the acceptance of which is the most human of adventures. No matter how much progress is made in rehabilitation techniques, no matter how generous the budgets for health and preventive services, it will never be possible to eliminate frailty from the earth, nor to abolish suffering, illness and death. It is illusory to think that the slogan "Health for all" can change the essentially weak and vulnerable condition of man, for to be a man is to receive an inevitable lot of pain and incapacity. Every man's life, his human destiny, includes the capacity to suffer and the acceptance of limitation.
Faced with the inexorability of weakness in the world, the physician strives to reduce the pain, anguish and handicaps of his patients, knowing that he will never know enough to completely defeat his enemies. Herein lies the human core of medicine. As demanding of science and skill is the operation of applying the most modern therapeutics, almost miraculous in their efficacy, as that of administering palliative care, which requires a great deal of knowledge and the mastery of what I believe to be the most difficult aspect of the medical art: knowing how to tell the sick that man is made to bear the wounds that illness and the passing of the years open in his body and spirit, that the acceptance of these limitations is part of the process of humanization. One is not truly human if one does not accept a certain Degree of weakness in oneself and in others. This is required of us as part of fulfilling the duty of being human.
I will end now. Someday the accounts of what our time has meant for the development of Science, of truly human Science, will be drawn up. Lewis Thomas, that most brilliant and paradoxical figure of American biological thought, has given us a revealing part of that judgment. "A society may be judged by the way it treats its most unfortunate members, the least liked, the insane. As things stand, we are going to be regarded as a very sad lot. It is time to make amends for our mistakes.
Thank you very much.
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[14] Parliamentary Report No. 25 (1992-1993) to the Storting, "Biotechnology related to Human Beings". Oslo: Ministry of Health and Social Affairs. 1993.
[15] The original essay of this paragraph was more abrupt: "We see this in many ways: the systematic destruction of the deficient through eugenic abortion, neonatal euthanasia or coercive sterilization of the genetically retarded; the elimination of terminal patients and the senile insane, through euthanasia or deprivation of food and drink; the trivialization of abortion for socioeconomic reasons; the alienation of the young embryo as alien to the human race, and much else besides. All of them have in common the loss of respect of the physician for certain groups of human beings weakened by pain, handicap or immaturity, the inability to defend themselves: those who should be the object of his utmost attention, are the object of the utmost contempt".