Nevertheless, the bioethics project has attracted sustained criticism. A claim running through such criticism is that the dominance of analytical philosophy and the alliance with medicine means that bioethics tends to miss—or misdiagnose—the most important ethical moments, as it delists the social context within which ethical encounters take place. These criticisms are longstanding, and have not been addressed by the development and diversification that has taken place in the field. This subfield casts itself as a departure from the typical concerns of bioethics, particularly the focus on autonomy.
Its success in this regard is somewhat limited and has been questioned by a number of scholars. We are told, almost invariably, that the central value conflict is between social utility and individual liberty. But what the mere value clarifier fails to offer is a substantive argument about what we should, or should not, actually do.
Instead, he or she retreats into the shadows leaving others to do the heavy lifting. Without further normative direction, these others naturally default to prevailing social norms that are often crudely understood and applied. For public health issues, the upshot is that this normative void is quickly filled by. This assumption casts a cloud of suspicion over public health initiatives from the outset, while firmly entrenching a particular view of liberty as a default value. The following Part introduces vulnerability theory as an analytical framework that has the potential to recalibrate our understanding of what is ethically important—that is, to recast the objects of ethical concern.
Vulnerability has long been a focus for philosophical inquiry, particularly within continental European thought. In bioethics, it is an emerging—if controversial—value. Here vulnerability is often cast as it is elsewhere: in functional terms where it is seen as a characteristic of particular individuals or populations. Healthcare Ethics , This may reflect how vulnerability emerged in bioethics, first appearing in the Belmont Report on the use of human subjects in clinical and behavioral research.
Nevertheless, it has subsequently been identified as a core value in the Universal Declaration on Bioethics and Human Rights. The declaration was adopted by member states of the United Nations Educational, Scientific and Cultural Organization in Article 8 recognizes respect for human vulnerability and personal integrity as fundamental values. Bioethics 44 It is argued that this aligns with an emerging biosocial terrain in the life-sciences and gives it greater potential traction in terms of the dynamics of incorporation outlined in the next Part.
It is part of our shared humanity that we all age and may be struck down by illness and natural or man-made disaster. Accepting this ontological vulnerability, our bodies and their strengths, weaknesses, and abilities nevertheless exist on a remarkable range. This directs us to attend to the fact that we are both embodied and embedded. Our embeddedness in social, economic, and institutional relationships shapes how resilient we are in experiencing and responding to our vulnerabilities.
It follows that there is a duty on the state and others to provide us with the assets or tools to be resilient when our vulnerability is made manifest. See Petherbridge, supra note The focus here, however, is the relationship between our embodied and embedded experience and a more material concern with our embodied experience.
As just noted, Fineman directs us to attend to the formal and informal institutions within which we are located. As the life sciences increasingly challenge the traditional division between the biological and the social, a vulnerability analysis can be interpreted as mapping this, mandating that we look to the various environments social and physical that bodies and lives are located within and which constitute and sustain us. Addressing this at both a material and theoretical level challenges ethical analysis in two important and related ways. First, it unsettles the autonomous, self-governing and bounded liberal subject that dominates the legal, policy, and ethical imaginaries.
Second, and related to this, it broadens our conceptions of dependency and responsibility. Before introducing the contemporary social turn in the life sciences, the next Part positions bioethics as a Foucauldian discursive formation. This justifies exploration of the increasing interdisciplinary attention to our embodied and embedded experience. Wolf ed. Albrecht et al. Bioethics, Spring , at Bioethics, Mar.
In response, it aligns itself with medicine, avoiding processes of feminization, and as a result it is prevented from attending to the needs of women. See, e. Purdy eds. This boundary-work means that feminist bioethics remains on the periphery having to start afresh each time it seeks to speak to the mainstream. This continues to be lamented from both within and outwith bioethics.
Health Ethics 50 However, just as mainstream bioethics is the product of a specific configuration of political and professional concerns at a particular historical moment, so change is likely to be equally dependent on specific conditions. As noted briefly above, bioethics and the specific form it has taken is a product of a particular moment in the history of biomedicine, its interaction with social movements, and the changing dynamics of the regulatory state. The project and its legitimacy are dependent on this history.
In promoting vulnerability theory as a new bioethical framework, this Article promotes the exploration of productive alliances mediated and enabled by the increasing attention to the socially embedded body. The argument is that the social body emerging in the life sciences and the embedded corporeality of vulnerability theory can provide a theoretical and normative point of contact. If bioethics is dependent on particular social, cultural, and political conditions of possibility, it is possible that the emergent and disperse interest in the socially embedded body may be harnessed to allow a reimagining of bioethics.
The new biological imagination may prove key in this. Monographs 61, 61 Within the shift in biological thinking, it is new understandings of the body that provide the particular point of potential alliance. This challenges not only past biological models, but also the traditional liberal subject of law, policy, and ethics. Sociologist, Summer , at 21 ; Jeremy Freese et al. These developments add new weight to calls for social context to be at the heart of bioethical enquiry and are provoking the disciplinary changes that may enable this to happen.
It is increasingly documented that we are undergoing a profound renegotiation of the boundaries between the social and the biological at a material level. Across the life sciences a biosocial world is being narrated, albeit one that remains dominated by hype and controversy. This biosocial world is evident in the socialization of gene functioning, the development of pro-social models of evolution, increasing emphasis on symbiotic processes that are multi-species in nature, attention to microbial life and its place within imagined networks of ecological life, and so forth.
While it is too early to talk of a paradigm-shift or Biology 2. The last two decades of research in neuroscience have been at the forefront of the epistemic changes in the life sciences. In this regard, there is a focus on how brain physiology directs us to consider the social. Biology ; Robin I. While the existence of mirror neurons in humans is highly controversial, they are also highly influential and are promoted as evidence of neural circuitry for imitation and empathy; and d empirical work is promoting an evolutionary basis for the design of neural structures. Specifically, studies that point to positive social interactions being experienced as pleasurable and experiences of rejection and isolation being analogous to physical pain, are taken to indicate a neuro-anatomy designed to reinforce social connection and cooperation.
Meloni, supra note 16, at — In this section, neuroscience is mobilized to provide a focused case study, as its history means it has penetrated popular, legal, and policy spheres. It has also engaged bioethics in a way that is helpful to consider as we discuss the limits of current practice and the possibilities afforded by vulnerability theory. A key aspect of our developing understanding of the brain is the notion of plasticity; the brain that responds to the social world at a structural level.
Understandings of the brain as plastic emerged from experiments on the rehabilitation of humans following brain injury and stroke. The importance of this plasticity was matched by the discovery of the growth of new nerve cells in the brain. Developments at the end of the twentieth century challenged the belief that neuron development occurs only in the initial years of life.
This rewrote a dominant understanding of the static brain, but also extended the reach of the new epigenetics as it was suggested that growth may be stimulated or inhibited by social and environmental factors. While these external factors may be negative, occasioning injury and loss, the scientific claims can also direct us to consider obligations to provide positive environments where flourishing and opportunity can be enhanced.
Thus, our embodiment becomes affected for both good and ill, depending on the environment within which it is embedded. This clearly marks a significant shift in scientific understanding, and, like the social biologies more generally, it also mandates that we rethink our understanding of and response to disadvantage and inequality at the levels of theory, law, and policy. Here, the new biological landscape challenges the distinctions frequently drawn between natural and social inequalities.
Thus, we have the Rawlsian distinction between natural goods like health and social goods like health care , in which only social goods are subject to distributive principles directed towards greater social justice. The new social biologies fundamentally challenge such premises and support models of social justice that attend to corporeality or concepts such as health equity or health justice. While these claims are potentially transformative, there is nevertheless good reason for a thorough critical appraisal of claims and their application.
There has, for example, been a scientific and policy focus on the child and the effects of the early years environment and parenting. Here, a series of studies with rats and their pups are taken to show that early life experiences most often associated with maternal behavior can shape brain form and function.
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Champagne et al. This may impact the lifespan and shape the maternal behavior of those offspring, and hence affect the gene expression of a third generation. In the literature and policy, the interpretation of the evidence moves seamlessly from animal experiments to implications for human behavior and biopolitical governance. A companion piece to this Article written with Samantha Lewis details how developmental neuroscience has inspired a wealth of public policy initiatives ostensibly directed at the infant brain and its social environment.
Yet, overwhelmingly these initiatives have been directed at the family and, indeed, the mother. Concern for the developing brain is funneled to interventions in the family that vary in the degree to which they are either helpful or punitive. In addition, you can ask students: What should qualify as a living will or advance health care directive?
Must it always be a signed or notarized official form, or should patients have other ways of communicating to doctors their medical wishes? Our society has witnessed a number of high-profile cases in which patients and families demanded more care while hospitals and insurers argued that some forms of care are too expensive to provide. One such case involved Bruce Hardy , a British man with kidney cancer. Money spent on extreme cases may mean less funding available for preventive medicine like flu shots, routine screenings such as mammograms, or research into cures for diseases like cancer and A.
Some scholars have argued in favor of rationing health care to make certain limited resources are spent wisely. In , Oregon adopted an ambitious and novel rationing plan : It increased the number of poor and working-class individuals eligible for free health care through Medicaid, but did so by limiting the kinds of care that Medicaid recipients might receive. Arizona attempted to cut funding for certain expensive procedures in , but backed down after a public outcry. Have students read about the Bruce Hardy case and then discuss or write about the following questions:.
If so, how much is too much? If not, why not? How much is six additional months of life worth? Why did you answer the way you did? Are there some procedures or medications that are simply too expensive for government insurance Medicare and Medicaid to pay for?
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If so, in order to maintain health care equality, should we also forbid wealthy people from purchasing these treatments privately? Health care funds can generally be distributed among three large categories of services: public health and preventive measures that reduce the risk of future disease like antismoking campaigns , acute and chronic medical care, and research to develop future treatments and cures.
How should the United States allocate its resources among these three groups? Instead, the money is spent on treatments deemed more cost effective including preventive medicine. Is this a fair system? The United States spent Is this too much? Too little? Should we spend more on health care to increase medical services or insurance coverage, even if this means less money to spend on other areas such as consumer goods?
Why or why not? The topics in this lesson asked students to ponder some broad, overarching questions at the nexus of medicine, law, public policy and philosophy — questions that Times articles touch on regularly in all kinds of contexts. Invite students to read, or search , The Times for more news and Opinion pieces that relate to any or all of the questions below. How would they answer these questions? How do the articles or Opinion pieces they found inform or complicate those answers? Why are the answers important to our society? Jacob M. Appel is a psychiatrist and bioethicist who has taught bioethics to both high school students and undergraduates.
Activity: Debating Under What Circumstances Health Care Providers Can Refuse Patients Ask students working in small groups to rank the arguments listed below, both in favor and against allowing the operators of the clinic to refuse service to Ms. In favor: 1. Opposed: 1. Activity: Making a Living Will Have students design their own living wills.
Worth of a Life? Normative as well as descriptive-comprised of interlocking general beliefs about knowledge, reality, and value-a world view so pervades and conditions our everyday thinking that it is largely unnoticed Luker, , p. Among the elements of a world view are one's deepest convictions about: a God that is, whether there is a God and, if so, God's nature; b the nature and purpose if any of the universe and human life; c the nature, justification, and extent of human knowledge; d the nature of human beings including, for example, their capacities for free will, goodness, compassion, selfishness, and, in certain world views, sin and redemption ; e the best way s to structure human relationships including sexual and familial relationships, friendship, political institutions, and obligations to strangers ; f the nature and status of morality, especially injunctions and principles having to do with the taking of life, the nature of equality, respect for liberty, and so on; and g the moral standing of nonhuman animals and the intrinsic value if any of the natural environment.
A world view, as this list suggests, may be theistic or entirely nontheistic. Closely related to a particular world view is a corresponding way of life. A person's world view and way of life are dynamically interrelated. A world view helps to structure a way of life; a way of life presupposes and embodies a particular world view. Deep changes in one are likely to occasion related changes in the other. A distinctive and easily recognized world view and way of life is that of the Amish. Most world views and ways of life are, however, more difficult to delineate in rapidly changing complex societies like ours which permit, if not encourage, the exercise of individual choice.
A complex amalgam of a wide variety of beliefs, attitudes, values, ideals, and practices, a contemporary world view and way of life is often highly customized. This is not, however, to say that these more individualized world views and ways of life are less significant to those who identify with them than a distinctively Amish world view and way of life is to those who identify with it. A world view and way of life gives shape and meaning to a person's life, providing the basis for his or her identity and integrity as a moral being.
World views and ways of life come into conflict because they are, for the most part, based on local and particular, rather than more general and universal, aspects of human life. Their perspectives are historically conditioned, contingent, and sometimes fiercely personal and parochial. Loyalties to particular institutions, practices, projects, and persons are often regarded as essential to one's way of life; they constitute much of one's identity and set one off from others as a particular person.
Not all world views and ways of life are, however, worthy of respect. A world view and way of life may be criticized for inconsistency or instability, or for clearly and systematically violating the principle of utility or the second formulation of Kant's Categorical Imperative "So act as to treat humanity, whether in thine own person or in that of any other, in every case as an end withal, never as a means only". Though unable fully to determine our world views and ways of life, these well-grounded principles serve as important constraints on them. World views and ways of life systematically indifferent to or contemptuous of the principle of utility or the Categorical Imperative must be rejected or at least constrained regardless of their historical roots or their importance to the identities of those holding them.
It is thus that world views and ways of life endorsing what clearly amounts to wanton cruelty and neglect, human sacrifice, and slavery are widely and rightly condemned. Campaigns to reform world views and ways of life incorporating more subtle violations of these principles are now being undertaken. Some—for example, those that have added "racism" and "sexism" to our vocabularies-have already achieved a measure of success.
Others-for example, those attempting to raise our consciousness about homophobia and speciesism-still have a long way to go.
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But the general point remains: World views and ways of life that clearly and systematically violate these more abstract and general principles are unreasonable and may be restricted. A world view and way of life is reasonable to the extent that it satisfies well-grounded, widely shared standards and principles of reason. The problem is that there are a number of reasonable world views and ways of life that occasionally engender differing answers to moral questions, especially questions of biomedical ethics. This diversity of reasonable comprehensive moral outlooks, as Rawls points out, "is not a mere historical condition that may soon pass away; it is a permanent feature of the public culture of democracy" Rawls, , p.
So long as people enjoy a certain amount of liberty of thought and action they will embrace a variety of reasonable world views and ways of life that will occasionally yield conflicting answers to moral questions. Agreement by all on a single world view and way of life can be maintained, as Rawls adds, only by "the oppressive use of state power" Rawls, , p. Rationality is, for the most part, an intellectual virtue having to do with the selection and pursuit of the most effective means to a set of carefully selected ends. Sibley writes,.
One's ends as a rational agent need not, however, be egoistic. Consider, for example, a paternalistic physician whose world view and way of life places a premium on improving other people's health and saving their lives. Insofar as this physician is rational he will do what he can to pursue this end.
But he is not, simply as a rational agent, required to give equal respect and concern to the conflicting reasonable ends of his patients. Rationality requires that the physician take his patients' ends into account only insofar as doing so is instrumentally necessary for effectively furthering those of his ends which incorporate, in this instance, his conception of their welfare that may be distinct from or opposed to theirs. If, therefore, the physician's obtaining consent to what he regards as beneficial treatment from a competent adult patient requires that he deceive the patient.
Reasonableness, on the other hand, requires giving equal or fair consideration to the reasonable ends or viewpoints of others for their own sakes. A person can therefore be rational without being reasonable, as shown by the example of the paternalistic physician. Reasonableness is a moral virtue, not simply an intellectual one.
To be reasonable is to seek reasons for one's conduct that respect the reasonable ends and points of view of those affected by it. It is therefore, in the light of moral pluralism, unreasonable to suppose that there is one and only one right answer to all moral questions. Insofar as I acknowledge that a disagreement between another person and myself is rooted in a conflict between reasonable world views and ways of life and I am committed to respecting the reasonable ends and points of view of others, I must admit that abstract, impersonal reason cannot, at least at this point, provide a resolution Benjamin, a, Ch.
Questions of biomedical ethics place unusual strain on our moral frameworks and traditions. In some cases, advances in medical knowledge and technology create choices and possibilities so complex or radically new or unprecedented that neither particular world views and ways of life nor abstract general principles provide much in the way of firm or direct guidance. The questions, we know, are important, but we are not quite sure what to think or do about them. We feel a need to learn more about the complex clinical, scientific, social, and ethical aspects of them before coming to a decision.
In other cases, these new choices and possibilities-especially those involving procreation, childbirth, child rearing, the nature of the family, and the termination of life-elicit clear and firm responses rooted in different world views and ways of life. Not only do we have ethical positions on these choices and possibilities, but they are deeply held and identity conferring. Yet they conflict with ethical positions rooted in other reasonable world views and ways of life that we cannot, insofar as we are reasonable, simply dismiss. Although we are clear about what we, as individuals, believe to be right, we are not quite sure what should be done by a health care team, a hospital, or a society when those directly affected hold conflicting, yet not unreasonable, positions.
It is the need for some sort of agreement or consensus in the light of the genuine uncertainty and reasonable disagreement characteristic of. The complexity of modern medicine often requires the close cooperation among members of a health care team, patients, and patients' families. Though some of these individuals may, at least initially, be uncertain about or hold conflicting positions on bioethical issues, they often need to agree on a single treatment plan. Respect for reasonable moral differences requires that this agreement be informed and uncoerced rather than imposed by deception or force by those with a monopoly on power.
If parties to a particular conflict are unable to come to such an agreement by themselves, they may seek assistance from an institutional ethics committee. The same is true of questions of hospital or national policy. Though different individuals and organizations may, for example, have conflicting, reasonable views on how transplantable organs ought to be allocated in the United States, a national system requires agreement on a single set of principles and criteria binding on all.
Here, too, respect for reasonable moral differences requires that this agreement be informed and uncoerced rather than imposed by force or deception. Suppose we find ourselves in a situation requiring a single policy on a complex bioethical question characterized by genuine uncertainty or reasonable disagreement. A committee or commission is constituted to examine the situation and recommend a policy.
The committee members represent or have access to all relevant aspects of biomedical, social scientific, cultural-religious, legal, and bioethical expertise on the matter, with emphasis on patient-citizen viewpoints. The group makes a concerted effort to identify all reasonable positions on the issue and to give them fair consideration. Moreover, no committee member or coalition of committee members is able to dominate the group's information-gathering, deliberation, or decision-making.
Finally, after considering all actual or imagined reasonable arguments and positions on the matter, the group comes to an informed, uncoerced agreement on what, for institutional or social purposes, is regarded by each member as the best answer to the question. This agreement may take the form of complete consensus, overlapping consensus, compromise, or even consensus to endorse the outcome of a vote between two or more reasonable positions, each of which is regarded by everyone as superior to the group's coming to no agreement on the matter.
A consensus meeting these conditions carries moral weight or adds normative significance to the group's recommendation because it respects both the depth of genuine uncertainty or the extent of reasonable disagreement on the matter and the need for informed, uncoerced agreement. This is. Yet the burden is on those who disagree to show why, for purposes of reasonable agreement in a pluralistic society, it is defective.
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Consider, as an illustration, a statement of general principles for allocating transplantable organs and tissues developed by the Ethics Committee of the United Network on Organ Sharing UNOS Ethics Committee, The group then acknowledged possible conflicts between the three principles and addressed means of resolving them. One strategy is to establish a fixed ranking of the principles-to prioritize or lexically order them in some way-and to always follow this ranking.
One might, for example, propose that autonomy is prior to and, in cases of conflict, overrides justice; and that justice is similarly prior to and, in cases of conflict, overrides utility. This was, however, rejected as overly rigid. Whatever ranking one established ahead of time, it is always possible to imagine situations in which the consequences of adhering to it would be unacceptable.
A second strategy is to address conflicts case by case, appealing to moral intuition. The problem with this is that people's intuitions differ widely on these matters, resulting in deadlock or a lack of uniformity from one transplant center to another and within centers from one person to another. A third strategy, which the committee endorsed, is to acknowledge the complexity of the situation and seek some sort of compromise or accommodation among the three principles. With regard to conflicts between utility and justice, for example, the committee states:.
While [individual] members of the Committee hold diverging positions regarding the ethically correct relations between utility and justice, a consensus has been reached for purposes of policy relative to organ and tissue allocation: utility. This means that it is unacceptable for an allocation policy to single-mindedly strive to maximize aggregate medical good without any consideration of justice in distribution or for a policy to be single-minded about promoting justice at the expense of the overall medical good [Ethics Committee, , p.
In cases of conflict, the committee proposed, justice and utility require equal consideration:. We make this proposal fully realizing that it may not square with the personal morality of many people. Some would insist on higher priority for utility; others for equity.
In fact, whole classes of people might be so inclined invariably to favor one of these principles or the other. The fact that one group would give very heavy weight to one or the other of the principles cannot, for public policy purposes, settle the matter. Inasmuch as: 1 neither side can provide conclusive arguments for its position; 2 each side can provide plausible arguments for its position; and 3 ours is a pluralistic society in which individual views cover the entire spectrum from pure utilitarianism to extreme egalitarianism, we believe that giving equal consideration to each is a fair and workable compromise [Ethics Committee, , p.
Apart from minor differences in wording, this line of reasoning closely resembles the one developed in this section. Though the committee's compromise might be rejected as the best moral position by a number of individuals as individuals, it cannot, the Committee suggests, be reasonably rejected as a basis for public policy by individuals as citizens for whom informed, unforced reasonable agreement on such principles is of great importance. Finally, we should note that this Committee, like the hospital ethics committee described above by Macklin, was unwilling to reach consensus at any cost.
The subcommittee drafting the initial document could not, for example, agree on whether carefully screened, abstinent alcoholic endstage liver disease patients should be able to compete equally with nonalcoholic patients for access to the limited supply of transplantable livers. After considerable discussion and a straw vote, subcommittee members concluded they could not, in good conscience, answer this question as a group. The final document states that "the Ethics Committee has not at this time reached a single position regarding the nonpunitive use of this factor [organ-damaging patterns of behavior] in allocation of organs" and then identifies arguments for and against the alternatives Ethics Committee, , p.
A consensus among members of an ethics committee or commission may be questioned in a number of ways. Doubts may be raised about a particular group's composition, its deliberations, and its substantive recommendations. Recall the "Appleton Consensus" Stanley et al. One might reasonably ask whether a group consisting only of physicians, bioethicists, and economists has given adequate consideration to all relevant, reasonable views on questions of foregoing medical treatment.
Were, for example, the possibly differing, reasonable viewpoints of patient-citizens, nurses, and allied health professionals given the same weight as those of the committee members? Were the committee members aware of, and capable of adequately representing, these other viewpoints? Consensus among members of a bioethics committee or commission has normative significance only if the group is broadly constituted. The group forming the Appleton Consensus, though it may in fact have identified and considered all reasonable positions, appears to fall short on this ground.
There is no mechanism or formula for putting together an effective, broadly constituted bioethics committee or commission. If, however, we are to attribute normative significance to any consensus it may reach, we must pay careful attention to the breadth of its membership Fleetwood et al. The deliberations of well-informed, broadly constituted committees or commissions may go wrong in a number of ways.
First, such groups may be co-opted to serve the partisan interests of those who appoint them Callahan, Second, the view of powerful or charismatic chairpersons, individual members, or subgroups may be given more weight than they deserve. Third, pressure to reach agreement may lead to avoiding controversial issues, underestimating risks and objections, ignoring unpopular or powerless viewpoints, failing to consider alternatives, failing to seek additional information, uncritically accepting secondhand information, or failing to exercise sufficient imagination or ingenuity in building consensus or devising compromise Lo, , p.
A problem endemic to committee deliberations is "groupthink," defined by Irving L. Janis as "a mode of thinking that people engage in when they are deeply involved in a cohesive in-group, when the members' strivings for unanimity override their motivation to realistically appraise alternative courses of action" Janis, , p. To be forewarned of these and other pitfalls of group dynamics is, however, to be forearmed.