SOC. Sci. & Med., Vol. II, pp. 449 to 451. Pergamon
Press 1977. Printed in Great Britain.
THREATS TO THE INDIVIDUAL* L. SMITH
HARMON
Duke University
Abstract-The development of large numbers of bio-medical intervent’ons within a relatively brief period of time presents both promise and peril. This paper is a brief lcomment upon some of the ways in which newly-found technologies threaten certain time-honored values and protections which, in Western culture, have attended individuals and groups. New knowledge and new technical capability sometimes are in conflict and competition with old warrants for intervention and old notions of human well-being. Who will decide whether a given intervention is good or bad, appropriate or inappropriate, full of promise or full of peril? And on what predicates will these assessments be made? Enlarging proficiency in technologic intervention makes control of our species life possible; incremental accomplishment in intervention makes control of our technology necessary.
be remedied unless the autonomy of the individual is re-established. In addition, broad dependency upon high-technology medicine is thought by some to expand the problem day-by-day. For example, there are 100,000 documented cases of hyperkinesis in the U.S. but one million of that country’s schoolchildren are medicated to control them in the classroom; or, the average cost of cardiac transplantation in the U.S. in 1975 exceeded $36,000 but its efficacy is seriously debated; or, about 150,000 patients in the U.S. are annually candidates for coronary-bypass surgery, at an average cost of $10,000, but the benefit of this operation appears to be principally symptomatic relief. In the absence of a national health insurance program (as in the U.S.) but with private insurance programs which continue to disadvantage the poor, some argue that dependency on high-technology medical care threatens both the general health of the nation and the particular needs of certain socioeconomic classes for health care. In a fee-for-service system, further threats are posed to individuals. For those able to pay, there.is prospect for inordinate dependency upon the promises of everexpanding medical technology to rescue from careless abuse of mind, body, and environment. For those unable to pay, deprivation of the most rudimentary health care needs is not unimaginable. Moreover, in a fee-for-service system, “sick care” is chiefly delivered because it is sickness, not health, to which the system responds, the reward system is tied, and the philosophy of medicine is oriented. One critic of the U.S. situation has observed that “Health is no more a priority of the American health industry than safe, cheap, efficient, pollution-free transportation is a priority of the American automobile industry.” In the end, however, the systemic threat may be greater to the dispossessed than to the affluent since, without a healthy body, the possibility for’ other health interests is seriously threatened or diminished. Similar threats to individuals follow from the allocation and distribution of scarce resources. It remains a troublesome question, who gets how much of what when there is not enough to go around? Sometimes the utilization question gets raised as, when is enough * This paper was prepared by invitation for presentation enough? IS the answer to these questions to be prediat the 5th Int. Conf. on Sot. Sci. & Med. at Nairobi, 8-12 cated upon some notion of social utility, ability to August, 1977. ._pay, first-come-first-served, lottery, or what? We do The title assigned for this paper does not yet define precisely the genre of “threats” or “individuals” to be addressed; so, in order to set one boundary, what follows will focus on threats posed by medical interventions and developments, both present and potential. The other boundary is more problematic inasmuch as individuals are never entirely separable from their social groupings. It is generally conceded, for example, that Hitler’s Germany (beginning for our purposes with the compulsory sterilization law promulgated in 1933, and proceeding to enforced euthanasia of the incurably insane and systematic extermination of certain races-including gypsies, Jews, Poles, and Russians) provides the most striking systematic menace and jeopardy in modern times to both individuals and discrete groups by physicians and other scientific investigators. On a more modest scale, it has been argued that other medical interventions and experimentsthe Southam-Mandel case, the thalidomide experience, the Tuskegee experiments, the recent mass sterilization program in India-have posed similarly serious threats to both individuals and groups. In each of these instances, however, what happened to individuals happened also to members of a discrete group; and it would probably misrepresent the facts to try to isolate one identity from the other. We cannot develop here every instance why this or that intervention of development might reasonably be called a “threat,” or why ,these individuals and groups are “threatened”; perhaps the sub-section can advance these aspects and offer a larger, international perspective to this topic. Neither are any delusions of grandeur entertained about this brief comment; it is only indicative and suggestive, and makes no claim to be either comprehensive or exhaustive. At the level of large and relatively discrete social groupings, several medical interventions and developments can be identified which seem to pose threats of one or another sort. Ivan Illich and others have described the nemesis of iatrogenic illness (illness caused by physicians) and argued that the negative effects of medicine’s expropriation of health will not
449
450
HARMON
not have a clear consensus in many settings involving many technologies; and meantime some individuals are threatened with inattention while, ironically, others appear to be threatened by over-attention. The Quinlan case in New Jersey, and more recently the Dockery case in Tennessee, instance many .of the problems which are generated by a costly and scarce high-technology which is employed in a society where wealth and resource are r&distributed. If there is a “right” toehealth care, what are its warrants and what can be claimed as its rudiments? Are egalitarianism and sanctity of life among these? Yet another general question, whose answer and implementation surely effect individuals, has to do with the concept of health and illness. There is sufficient evidence from cross-cultural, as well as other anthropological and sociological, studies to show that health and illness are social constructions rather than objective pathological conditions. What is health in one society may be illness in another, and vice versa. In Western medicine, the historical warrant for medical intervention has been the presence of a definitely diagnosed physiological lesion. Psychiatry, together with psychiatric neurosurgery, may represent the most obvious challenge to that traditional warrant. The implications-in terms, for example, of involuntary commitment, lobotomy and lobectomy, and brain surgery for the control of violence--of this altered understanding, as a threat to individuals, is perhaps self-evident. Together with this reinterpretation, however, another protection for the individual is similarly eroded: that is, that the physician’s obligation to provide care is supposed to be referenced exclusively to the primary patient and not to any spinoff benefits which might subsequently accrue to other dependent populations. Revision of either or both of these classical predicates for medical intervention poses serious threat to individual patients, at least as we have conventionally conceived this matter and particularly in cases where the physician is also investigator. At the level of rather general threats, then, we can cite the problems associated with high technology, with medical economics, with the expropriation of health and increasing over-medicalization, with the concepts of health and illness, and with access and distribution difficulties which appear to be endemic in stratified societies. We can also include under this head large-scale investigations, especially randomized and double-blind studies, and regional and national data banks which escalate the possibility for invasion of privacy, as additional instances of present or potential threat to individuals. Threats at a more personal level participate in the group phenomenon but can be nuanced differently. Here one thinks more particularly of the condition of disease or illness, rather than membership in a certain class, which makes an individual vulnerable to abuse from medical intervention and development; but epidemiological studies suggest that this, too, is a contingent distinction. For example, of the first 100 human heart homografts in the U.S., 64 of the donors and one of the recipients were black. That blacks in U.S. society are engaged in occupations which make them more susceptible to head trauma injury, and that whites in U.S. society are engaged in occupations
L. Shern which make them more liable to cardio-vascular disease, does not exhaust the significance of the data. Considering the systemic consequences of a particular kind of social organization, individual vulnerability is probably relative to several factors which transcend mere individuation. More prominently in the early stages than in recent years, dying and organ transplantation have suggested a double threat to some patients: on the one hand there was the threat of “premature harvesting” of needed organs, and on the other hand there was the conservative reaction to maintain potential donors beyond any appearance of “cannibalism.” The problem was already before us in renal transplantation; but following C. N. Barnard’s first human heart homograft in 1967, national medical societies followed the example of the World Medical Association by adopting procedures which required separation of the medical teams attending donors and recipients respectively. This threat, however, is not yet entirely removed. The demand for transplant organs still greatly exceeds the supply; concurrently, the concept of brain death is receiving increasing attention in some societies. The absence of uniform operational criteria for death provides occasion for dissimilar treatment of similar cases, and this poses threats quite independently of implications associated with transplantation. Like questions of equity and fairness have arisen regarding abortion and access to contraception and sterilization. These questions typically get raised as a threat to some argued private right (e.g. to control one’s own body); but there may be more subtle threats attendant to these procedures than popular rhetoric has noted. Medical, together with social and political, pressures frequently encourage abortion; but lack of adequate longitudinal studies raises the possibility of hazardous physiological and psychological sequelae, especially with respect to multiple abortions. These threats, on the one hand, are of premature birth, deformed fetuses, and miscarriage or spontaneous abortion from multiple scarrings of the edometrium; and, on the other hand, toward engendering and reinforcing dependency on medical solutions for socially and personally careless conduct. Minimally we need to know the long-term consequences; meantime, persons are put at unnecessary risk of unwanted pregnancy and/or unknown sequelae of multiple abortions. Doctrinaire withholding of abortion, for opposite but similarly uncritical reasons, poses other and well-known kinds of threats. Closely allied to threats posed by abortion, and correlated with modern medicine’s general lack of interest in either follow-up or prevention, are contraception and sterilization. The absence of large-scale programs for contraceptive education and distribution continues to deprive some persons of the information and means needed to control their own fecundity; and, considering that the alternatives for control are principally abortion or sterilization, this is especially tragic. The possible imposition of values from the technological “have” nations upon the technological “have-not” nations only complicates this matter by additional political and economic factors. Moreover, the frequency with which female sterilization is performed, sometimes without even pro-
Threats to the individual forma consent and often within the setting of male-
dominated views of sexuality, is a threat to some women. That males refuse, for cultural and egoistic reasons, to undergo vasectomy (which is quite as effective as tubal ligation or hysterectomy, but attended by less risk, trauma, and cost) puts their female partners under threat of unwanted pregnancy, abortion, or sterilization. The threats just mentioned are counterposed by artificial insemination and in vitro fertilization and embryo implantation. The issues here are not only the separation of love-making from baby-making, but also the train of potential consequences which follow for family life and stable social organization. There is some evidence that AI babies put considerable strain on marriage by being a constant reminder to the husband of his inability to impregnate, i.e. to be a man. But, again as an instance of overcommitment of expectations for the “good life” to biomedical technology, one wonders about the long-term threats potentially posed by this procedure and its counterpart, in vitro fertilization and embryo implantation. The implications of genetic manipulation by controlled conception, and other genetic interventions, are relevant here. Even more subtle, however, may be the threats posed to those who provide the “raw materials” for these procedures and studies. Medical students, because they were a captive population, were the initial sperm donors; and those couples who now provide sperms and eggs for in vitro studies are themselves “in bondage” to infertility and contributing these materials in anticipation of hoped-for pregnancy (some day!) by this method. Is it possible that such a utilitarian perspective might treat person’s bodies as only bodies, and in that process demoralize the persons whose bodies they are? In this (perhaps uncustomary) context, we might note that prisoners, children, the mentally disabled, and patients with chronic disease share these general dependencies, which in turn make them vulnerable to abuse. Not enough attention has been given to the ways in which a chronic condition predisposes persons to acceptance of what, under other circumstances, would be thought inordinate risk or threat.
451
The large set of questions associated with consent constitute another threat to both individuals and groups. The consent mechanism became prominent following World War II, and then as a protection for patients and subjects against inappropriate treatment or unscrupulous investigations. In the U.S., current professional concern for consent has largely converted the earlier intention from patient-subject protection to physician-investigator protection; with the result that whether the patient or subject gives a valid consent has often become subordinate to whether the physician or investigator can claim to have fulfilled a legal duty. Conflict of interest in the consent situation is a threat both real and potential; and this is no less the case in research than in therapeutic settings. Finally, we can cite that general circumstance within which most, if not all, of these threats occur. It is in the nature of the arrangement that disproportionate power resides in an organized profession vishis its clientele, and this is the case in relationships between physicians and their patients. In sometimes quite overt and explicit ways, and sometimes in subtle and insidious ways, an individual patient is not only dependent upon the ministrations of an individual physician but also upon the large and complex support system which stands behind the private doctor. This factor deserves mention in order to gain perspective on how threats of this sort get actualized. Dependency itself does not ineluctably lead to abuse, but it does tend in that direction. The positive aspect of dependency is that it is the basis for community and contract and covenant; but its negative aspect is that it is the occasion for exploitation and oppression. We can reiterate that this brief comment has identified only some of the threats which derive from an ever-expanding bio-medical technology. The sub-section might usefully enlarge upon and make more comprehensive the catalogue of items appropriate to this topic. Meantime, it is worth noting that medical intervention and development presents us with both promise and peril, and that it may be the intentional purpose of an exercise like this to maximize the former and minimize the latter.
Press 1977. Printed in Great Britain.
THREATS TO THE INDIVIDUAL* L. SMITH
HARMON
Duke University
Abstract-The development of large numbers of bio-medical intervent’ons within a relatively brief period of time presents both promise and peril. This paper is a brief lcomment upon some of the ways in which newly-found technologies threaten certain time-honored values and protections which, in Western culture, have attended individuals and groups. New knowledge and new technical capability sometimes are in conflict and competition with old warrants for intervention and old notions of human well-being. Who will decide whether a given intervention is good or bad, appropriate or inappropriate, full of promise or full of peril? And on what predicates will these assessments be made? Enlarging proficiency in technologic intervention makes control of our species life possible; incremental accomplishment in intervention makes control of our technology necessary.
be remedied unless the autonomy of the individual is re-established. In addition, broad dependency upon high-technology medicine is thought by some to expand the problem day-by-day. For example, there are 100,000 documented cases of hyperkinesis in the U.S. but one million of that country’s schoolchildren are medicated to control them in the classroom; or, the average cost of cardiac transplantation in the U.S. in 1975 exceeded $36,000 but its efficacy is seriously debated; or, about 150,000 patients in the U.S. are annually candidates for coronary-bypass surgery, at an average cost of $10,000, but the benefit of this operation appears to be principally symptomatic relief. In the absence of a national health insurance program (as in the U.S.) but with private insurance programs which continue to disadvantage the poor, some argue that dependency on high-technology medical care threatens both the general health of the nation and the particular needs of certain socioeconomic classes for health care. In a fee-for-service system, further threats are posed to individuals. For those able to pay, there.is prospect for inordinate dependency upon the promises of everexpanding medical technology to rescue from careless abuse of mind, body, and environment. For those unable to pay, deprivation of the most rudimentary health care needs is not unimaginable. Moreover, in a fee-for-service system, “sick care” is chiefly delivered because it is sickness, not health, to which the system responds, the reward system is tied, and the philosophy of medicine is oriented. One critic of the U.S. situation has observed that “Health is no more a priority of the American health industry than safe, cheap, efficient, pollution-free transportation is a priority of the American automobile industry.” In the end, however, the systemic threat may be greater to the dispossessed than to the affluent since, without a healthy body, the possibility for’ other health interests is seriously threatened or diminished. Similar threats to individuals follow from the allocation and distribution of scarce resources. It remains a troublesome question, who gets how much of what when there is not enough to go around? Sometimes the utilization question gets raised as, when is enough * This paper was prepared by invitation for presentation enough? IS the answer to these questions to be prediat the 5th Int. Conf. on Sot. Sci. & Med. at Nairobi, 8-12 cated upon some notion of social utility, ability to August, 1977. ._pay, first-come-first-served, lottery, or what? We do The title assigned for this paper does not yet define precisely the genre of “threats” or “individuals” to be addressed; so, in order to set one boundary, what follows will focus on threats posed by medical interventions and developments, both present and potential. The other boundary is more problematic inasmuch as individuals are never entirely separable from their social groupings. It is generally conceded, for example, that Hitler’s Germany (beginning for our purposes with the compulsory sterilization law promulgated in 1933, and proceeding to enforced euthanasia of the incurably insane and systematic extermination of certain races-including gypsies, Jews, Poles, and Russians) provides the most striking systematic menace and jeopardy in modern times to both individuals and discrete groups by physicians and other scientific investigators. On a more modest scale, it has been argued that other medical interventions and experimentsthe Southam-Mandel case, the thalidomide experience, the Tuskegee experiments, the recent mass sterilization program in India-have posed similarly serious threats to both individuals and groups. In each of these instances, however, what happened to individuals happened also to members of a discrete group; and it would probably misrepresent the facts to try to isolate one identity from the other. We cannot develop here every instance why this or that intervention of development might reasonably be called a “threat,” or why ,these individuals and groups are “threatened”; perhaps the sub-section can advance these aspects and offer a larger, international perspective to this topic. Neither are any delusions of grandeur entertained about this brief comment; it is only indicative and suggestive, and makes no claim to be either comprehensive or exhaustive. At the level of large and relatively discrete social groupings, several medical interventions and developments can be identified which seem to pose threats of one or another sort. Ivan Illich and others have described the nemesis of iatrogenic illness (illness caused by physicians) and argued that the negative effects of medicine’s expropriation of health will not
449
450
HARMON
not have a clear consensus in many settings involving many technologies; and meantime some individuals are threatened with inattention while, ironically, others appear to be threatened by over-attention. The Quinlan case in New Jersey, and more recently the Dockery case in Tennessee, instance many .of the problems which are generated by a costly and scarce high-technology which is employed in a society where wealth and resource are r&distributed. If there is a “right” toehealth care, what are its warrants and what can be claimed as its rudiments? Are egalitarianism and sanctity of life among these? Yet another general question, whose answer and implementation surely effect individuals, has to do with the concept of health and illness. There is sufficient evidence from cross-cultural, as well as other anthropological and sociological, studies to show that health and illness are social constructions rather than objective pathological conditions. What is health in one society may be illness in another, and vice versa. In Western medicine, the historical warrant for medical intervention has been the presence of a definitely diagnosed physiological lesion. Psychiatry, together with psychiatric neurosurgery, may represent the most obvious challenge to that traditional warrant. The implications-in terms, for example, of involuntary commitment, lobotomy and lobectomy, and brain surgery for the control of violence--of this altered understanding, as a threat to individuals, is perhaps self-evident. Together with this reinterpretation, however, another protection for the individual is similarly eroded: that is, that the physician’s obligation to provide care is supposed to be referenced exclusively to the primary patient and not to any spinoff benefits which might subsequently accrue to other dependent populations. Revision of either or both of these classical predicates for medical intervention poses serious threat to individual patients, at least as we have conventionally conceived this matter and particularly in cases where the physician is also investigator. At the level of rather general threats, then, we can cite the problems associated with high technology, with medical economics, with the expropriation of health and increasing over-medicalization, with the concepts of health and illness, and with access and distribution difficulties which appear to be endemic in stratified societies. We can also include under this head large-scale investigations, especially randomized and double-blind studies, and regional and national data banks which escalate the possibility for invasion of privacy, as additional instances of present or potential threat to individuals. Threats at a more personal level participate in the group phenomenon but can be nuanced differently. Here one thinks more particularly of the condition of disease or illness, rather than membership in a certain class, which makes an individual vulnerable to abuse from medical intervention and development; but epidemiological studies suggest that this, too, is a contingent distinction. For example, of the first 100 human heart homografts in the U.S., 64 of the donors and one of the recipients were black. That blacks in U.S. society are engaged in occupations which make them more susceptible to head trauma injury, and that whites in U.S. society are engaged in occupations
L. Shern which make them more liable to cardio-vascular disease, does not exhaust the significance of the data. Considering the systemic consequences of a particular kind of social organization, individual vulnerability is probably relative to several factors which transcend mere individuation. More prominently in the early stages than in recent years, dying and organ transplantation have suggested a double threat to some patients: on the one hand there was the threat of “premature harvesting” of needed organs, and on the other hand there was the conservative reaction to maintain potential donors beyond any appearance of “cannibalism.” The problem was already before us in renal transplantation; but following C. N. Barnard’s first human heart homograft in 1967, national medical societies followed the example of the World Medical Association by adopting procedures which required separation of the medical teams attending donors and recipients respectively. This threat, however, is not yet entirely removed. The demand for transplant organs still greatly exceeds the supply; concurrently, the concept of brain death is receiving increasing attention in some societies. The absence of uniform operational criteria for death provides occasion for dissimilar treatment of similar cases, and this poses threats quite independently of implications associated with transplantation. Like questions of equity and fairness have arisen regarding abortion and access to contraception and sterilization. These questions typically get raised as a threat to some argued private right (e.g. to control one’s own body); but there may be more subtle threats attendant to these procedures than popular rhetoric has noted. Medical, together with social and political, pressures frequently encourage abortion; but lack of adequate longitudinal studies raises the possibility of hazardous physiological and psychological sequelae, especially with respect to multiple abortions. These threats, on the one hand, are of premature birth, deformed fetuses, and miscarriage or spontaneous abortion from multiple scarrings of the edometrium; and, on the other hand, toward engendering and reinforcing dependency on medical solutions for socially and personally careless conduct. Minimally we need to know the long-term consequences; meantime, persons are put at unnecessary risk of unwanted pregnancy and/or unknown sequelae of multiple abortions. Doctrinaire withholding of abortion, for opposite but similarly uncritical reasons, poses other and well-known kinds of threats. Closely allied to threats posed by abortion, and correlated with modern medicine’s general lack of interest in either follow-up or prevention, are contraception and sterilization. The absence of large-scale programs for contraceptive education and distribution continues to deprive some persons of the information and means needed to control their own fecundity; and, considering that the alternatives for control are principally abortion or sterilization, this is especially tragic. The possible imposition of values from the technological “have” nations upon the technological “have-not” nations only complicates this matter by additional political and economic factors. Moreover, the frequency with which female sterilization is performed, sometimes without even pro-
Threats to the individual forma consent and often within the setting of male-
dominated views of sexuality, is a threat to some women. That males refuse, for cultural and egoistic reasons, to undergo vasectomy (which is quite as effective as tubal ligation or hysterectomy, but attended by less risk, trauma, and cost) puts their female partners under threat of unwanted pregnancy, abortion, or sterilization. The threats just mentioned are counterposed by artificial insemination and in vitro fertilization and embryo implantation. The issues here are not only the separation of love-making from baby-making, but also the train of potential consequences which follow for family life and stable social organization. There is some evidence that AI babies put considerable strain on marriage by being a constant reminder to the husband of his inability to impregnate, i.e. to be a man. But, again as an instance of overcommitment of expectations for the “good life” to biomedical technology, one wonders about the long-term threats potentially posed by this procedure and its counterpart, in vitro fertilization and embryo implantation. The implications of genetic manipulation by controlled conception, and other genetic interventions, are relevant here. Even more subtle, however, may be the threats posed to those who provide the “raw materials” for these procedures and studies. Medical students, because they were a captive population, were the initial sperm donors; and those couples who now provide sperms and eggs for in vitro studies are themselves “in bondage” to infertility and contributing these materials in anticipation of hoped-for pregnancy (some day!) by this method. Is it possible that such a utilitarian perspective might treat person’s bodies as only bodies, and in that process demoralize the persons whose bodies they are? In this (perhaps uncustomary) context, we might note that prisoners, children, the mentally disabled, and patients with chronic disease share these general dependencies, which in turn make them vulnerable to abuse. Not enough attention has been given to the ways in which a chronic condition predisposes persons to acceptance of what, under other circumstances, would be thought inordinate risk or threat.
451
The large set of questions associated with consent constitute another threat to both individuals and groups. The consent mechanism became prominent following World War II, and then as a protection for patients and subjects against inappropriate treatment or unscrupulous investigations. In the U.S., current professional concern for consent has largely converted the earlier intention from patient-subject protection to physician-investigator protection; with the result that whether the patient or subject gives a valid consent has often become subordinate to whether the physician or investigator can claim to have fulfilled a legal duty. Conflict of interest in the consent situation is a threat both real and potential; and this is no less the case in research than in therapeutic settings. Finally, we can cite that general circumstance within which most, if not all, of these threats occur. It is in the nature of the arrangement that disproportionate power resides in an organized profession vishis its clientele, and this is the case in relationships between physicians and their patients. In sometimes quite overt and explicit ways, and sometimes in subtle and insidious ways, an individual patient is not only dependent upon the ministrations of an individual physician but also upon the large and complex support system which stands behind the private doctor. This factor deserves mention in order to gain perspective on how threats of this sort get actualized. Dependency itself does not ineluctably lead to abuse, but it does tend in that direction. The positive aspect of dependency is that it is the basis for community and contract and covenant; but its negative aspect is that it is the occasion for exploitation and oppression. We can reiterate that this brief comment has identified only some of the threats which derive from an ever-expanding bio-medical technology. The sub-section might usefully enlarge upon and make more comprehensive the catalogue of items appropriate to this topic. Meantime, it is worth noting that medical intervention and development presents us with both promise and peril, and that it may be the intentional purpose of an exercise like this to maximize the former and minimize the latter.
