The Porosity of Autonomy: Social and Biological Constitution of the Patient in Biomedicine

The nature and role of the patient in biomedicine comprise issues central to bioethical inquiry. Given its developmental history grounded firmly in a backlash against 20th-century cases of egregious human subjects abuse, contemporary medical bioethics has come to rely on a fundamental assumption: the unit of care (and the unit of value) is the autonomous self-directing patient. In this article we examine first the structure of the feminist social critique of autonomy. Then we show that a parallel argument can be made against relational autonomy as well, demonstrating how this second concept of autonomy fails to take sufficiently into account an array of biological determinants, particularly those from microbial biology. Finally, in light of this biological critique, we question whether or to what extent any relevant and meaningful view of autonomy can be recovered in the contemporary landscape of bioethics.     

Personhood: Elusive But Not Illusory

Bioethics as a field has been fortunate that its values and concerns have mirrored the values and concerns of society. In light of the September 11th attacks, it is possible that we are witnessing the beginning of a transition in American culture, one fraught with implications for bioethics. The emphasis on autonomy and individual rights may come to be tempered by greater concern over the collective good. Increased emphasis on solidarity over autonomy could greatly alter public response to research abuses aimed at defense from bioterrorism, to privacy of genetic information, and to control of private medical resources to protect the public health.     

Bioethics after the terror

Bioethics as a field has been fortunate that its values and concerns have mirrored the values and concerns of society. In light of the September 11th attacks, it is possible that we are witnessing the beginning of a transition in American culture, one fraught with implications for bioethics. The emphasis on autonomy and individual rights may come to be tempered by greater concern over the collective good. Increased emphasis on solidarity over autonomy could greatly alter public response to research abuses aimed at defense from bioterrorism, to privacy of genetic information, and to control of private medical resources to protect the public health.     

Challenging the bioethical application of the autonomy principle within multicultural societies

This article critically re-examines the application of the principle of patient autonomy within bioethics. In complex societies such as those found in North America and Europe health care professionals are increasingly confronted by patients from diverse ethnic, cultural, and religious backgrounds. This affects the relationship between clinicians and patients to the extent that patients' deliberations upon the proposed courses of treatment can, in various ways and to varying extents, be influenced by their ethnic, cultural, and religious commitments. The principle of patient autonomy is the main normative constraint imposed upon medical treatment. Bioethicists typically appeal to the principle of patient autonomy as a means for generally attempting to resolve conflict between patients and clinicians. In recent years a number of bioethicists have responded to the condition of multiculturalism by arguing that the autonomy principle provides the basis for a common moral discourse capable of regulating the relationship between clinicians and patients in those situations where patients' beliefs and commitments do or may contradict the ethos of biomedicine. This article challenges that claim. I argue that the precise manner in which the autonomy principle is philosophically formulated within such accounts prohibits bioethicists' deployment of autonomy as a core ideal for a common moral discourse within multicultural societies. The formulation of autonomy underlying such accounts cannot be extended to simply assimilate individuals' most fundamental religious and cultural commitments and affiliations per se. I challenge the assumption that respecting prospective patients' fundamental religious and cultural commitments is necessarily always compatible with respecting their autonomy. I argue that the character of some peoples' relationship with their cultural or religious community acts to significantly constrain the possibilities for acting autonomously. The implication is clear. The autonomy principle may be presently invalidly applied in certain circumstances because the conditions for the exercise of autonomy have not been fully or even adequately satisfied. This is a controversial claim. The precise terms of my argument, while addressing the specific application of the autonomy principle within bioethics, will resonate beyond this sphere and raises questions for attempts to establish a common moral discourse upon the ideal of personal autonomy within multicultural societies generally.     

Health care reform: Can a communitarian perspective be salvaged?

The United States is culturally oriented more toward individual rights and values than to communitarian values. That proclivity has made it hard to develop a common good, or solidarity-based, perspective on health care. Too many people believe they have no obligation to support the health care of others and resist a strong role for government, higher taxation, or reduced health benefits. I argue that we need to build a communitarian perspective on the concept of solidarity, which has been the concept underlying European health care systems, by focusing not on individual needs, but rather, on those of different age groups—that is, what people need at different stages of life.     

The plurality of Chinese and American medical moralities: toward an interpretive cross-cultural bioethics

Since the late 1970s, American appraisals of Chinese medical ethics and Chinese responses to American bioethics range from frank criticism to warm appreciation, from refutation to acceptance. Yet in the United States as well as in China, American bioethics and Chinese medical ethics have been seen, respectively, as individualistic and communitarian. In this widely-accepted general comparison, the great variation in the two medical moralities, especially the diversity of Chinese experiences, has been unfortunately minimized, if not totally ignored. Neither American bioethics nor Chinese medical ethics is a field with only one dominant way of thinking. Medical moralities in America and China -- traditional and modern -- have always been plural and diverse. For example, American and Chinese cultures and medical moralities both exhibit individualistic and communitarian traditions. For this reason, bioethics in general and cross-cultural bioethics in particular must be fundamentally interpretive. Interpretive cross-cultural bioethics appreciates the plurality of medical morality within any culture. It can serve as a vital means of social and cultural criticism through engaged interpretations.     

Agency and authenticity: Which value grounds patient choice?

In current American medical practice, autonomy is assumed to be more valuable than human life: if a patient autonomously refuses lifesaving treatment, the doctors are supposed to let him die. In this paper we discuss two values that might be at stake in such clinical contexts. Usually, we hear only of autonomy and best interests. However, here, autonomy is ambiguous between two concepts—concepts that are tied to different values and to different philosophical traditions. In some cases, the two values (that of agency and that of authenticity) entail different outcomes. We argue that the comparative value of these values needs to be assessed.     

Moral Cosmology, Religion, and Adult Values for Children

We hypothesize that the religiously orthodox, who are theologically communitarian/authoritarian in seeing individuals as subsumed by a larger community of believers and as subject to timeless divine law, are more likely to value obedience in children over autonomy than are theological modernists, who are theologically individualistic in seeing individuals, not a deity, as the ultimate arbiters of right and wrong. We hypothesize further that differences in moral cosmology (orthodoxy vs. modernism) within faith traditions are more important for the values adults seek to instile in children than are differences between traditions. Through analyses of national data from the 1998 General Social Survey, we find strong confirmation of both hypotheses. Moral cosmology is the single-most important factor in valuations of obedience and autonomy in children. While evangelical Protestants differ from Catholics, mainline Protestants, and those with no religion in their values for children, moral cosmology is associated with differences in values for children within each of the faith traditions, including evangelical Protestants. We conclude that intra-faith differences in moral cosmology are key in explaining values for children, but have not completely supplanted interfaith differences .     

The role of ‘<Emphasis Type="Italic">accompagnement</Emphasis>’ in the end-of-life debate in France: from solidarity to autonomy

This article traces the way autonomy has become a recognised value in health care in France. In a country that based its social fundamentals on the very idea of solidarity for many years, autonomy has long been considered a foreign ‘Anglo-American principle’. Taking the example of the end-of-life debate, the article shows, however, how the use of the French term ‘accompagnement’ allowed autonomy to be redefined and to be associated with the concept of solidarity. Exploring the arguments used over the past 25 years in professional guidelines, parliamentary reports, ethics committee reports, and legal texts, the authors describe the shift that took place in public and legal discourses on end-of-life care. The analysis demonstrates how the scope of autonomy has been limited by other social values, such as the protection of the dying person, in order to become an accepted social value in its own right. The example of the French end-of-life debate shows that depending on how the concept of autonomy is adapted and applied in a specific context, it can be compatible with the idea of solidarity. Such compatibility has been challenged previously in the international bioethics debate. By demonstrating the possibility of combining autonomy and solidarity, this article makes an important contribution to the international bioethics debate and to the dialogue between countries that are often perceived as significantly different.     

European values in bioethics: why,what, and how to be used?

Are there distinctly European values in bioethics, and if there are, what are they? Some Continental philosophers have argued that the principles of dignity, precaution, and solidarity reflect the European ethos better than the liberal concepts of autonomy, harm, and justice. These principles, so the argument goes, elevate prudence over hedonism, communality over individualism, and moral sense over pragmatism. Contrary to what their proponents often believe, however, dignity, precaution, and solidarity can be interpreted in many ways, and it is not clear which reading would, or should, be favored by popular opinion. It is therefore dangerous to think that any one understanding of "European", or any other, values could be legitimately imposed on those who have different ideas about morality in health care and related fields. Bioethical principles should be employed to promote discussion, not to suppress it.     

“Family Matters”: A Conceptual Framework for Genetic Testing in Children

Genetic testing in minor children presents a complex ethical and social problem. Current guidelines state that genetic testing of children is recommended only under circumstances where a clear medical or psychosocial benefit to the child can be demonstrated. Because of the difficulty in determining a psychosocial benefit, the discussion about genetic testing of minors ultimately tends to focus on who has the right to make the decision and whose right to autonomy is jeopardized, the parent's or the child's, when there is no identified medical benefit. Historically, a western bioethics paradigm, Principlism, has been used to guide genetic counseling sessions and genetic-testing guidelines for minors. This bioethics paradigm is guided by the principles: respect for autonomy, beneficence, nonmaleficence, and justice. Genetic testing in children, when viewed through a traditional bioethics filter is limited by its focus on the individual because children are not only individuals, they are also integral parts of a larger social context, that of their family. Because this bioethics paradigm places a strong emphasis on individual autonomy, the family's beliefs and values and the parents' concern for their children may be overshadowed by the medical community's attempt to preserve the child's "right" to an autonomous decision about genetic testing. The purpose of this paper is to present a theoretical and ethics-based conceptual framework that may be useful in the development of genetic counseling interventions.     

Who is buying bioethics research?

Growing ties to private industry have prompted many to question the impartiality of academic bioethicists who receive financial support from for-profit corporations in exchange for ethics-related services and research. To the extent that corporate sponsors may view bioethics as little more than a way to strengthen public relations or avoid potential controversy, close ties to industry may pose serious threats to professional independence. New sources of support from private industry may also divert bioethicists from pursuing topics of greater social importance, such as the needs of medically underserved communities. To inform ongoing debates about the financing of bioethics and its transparency to those concerned about potential sources of bias, we examined funding disclosures appearing in original research reports in major bioethics journals. Reviewing research published over a 15-year period, we found little evidence that for-profit corporations are influencing bioethics research directly. Instead, we found evidence that a great number of organizations, both public and private, support bioethics research. These findings suggest that worries about the cooption of bioethics research by a few interested stakeholders are greatly overstated and undersupported by available data.     

患者的自主权及困境

在生命伦理学中,尊重自主性原则是指尊重病人或受试者的自主性,可理解为病人自主原则。自主性的实现涉及到自主性的人与自主性的选择,面对复杂的医疗情境,患者自主权的实施面临着重重困境。从自主、病人自主原则、病人自主的实践三个层面讨论了该原则,并尝试用境遇伦理学原理来解决病人自主原则的实践困境。     

Misapplying autonomy: why patient wishes cannot settle treatment decisions

Theoretical Medicine and Bioethics - The principle of autonomy is widely recognized to be of utmost importance in bioethics; however, we argue that this principle is often misapplied when one fails...     

Equality, Justice, and Paternalism: Recentreing Debate about Physician-Assisted Suicide

abstract   Debate about physician-assisted suicide has typically focused on the values of autonomy and patient wellbeing. This is understandable, even reasonable, given the import-ance of these values in bioethics. However, these are not the only moral values there are. The purpose of this paper is to examine physician-assisted suicide on the basis of the values of equality and justice. In particular, I will evaluate two arguments that invoke equality, one in favour of physician-assisted suicide, one against it, and I will eventually argue that a convincing equality-based argument in support of physician-assisted suicide is available. I will conclude by showing how an equality-based perspective transforms some secondary features of debate about this issue.     

Limiting the role of the family in discontinuation of life sustaining treatment

In matters of discontinuation of life-sustaining treatment, traditional role of the family to speak on behalf of the incompetent patient is questionable. We explore the reasons why physicians perceive patient autonomy to be transferrable to family members. Principle of patient autonomy may not suffice when futile treatment is demanded and may serve to erode the ethical integrity of medical profession. An enhanced role for bioethics committees is proposed when physicians propose to discontinue life-sustaining treatment against the wishes of the patient or their families.     

Exploring the regulation of need-satisfying goals: A baseline model

Intrinsic goals fulfill fundamental psychological needs for relatedness, competence, and autonomy. They tend to be self-determined, effectively pursued, and contribute to well-being. But even need-satisfying goals are pursued in the context of finite resources: How do we prioritize amongst multiple need-satisfying goals? Integrating self-determination theory with other needs theories, we proposed a baseline model whereby goals that are predominately relevant to relatedness would be prioritized over those predominately relevant to competence or autonomy. 202 participants completed a web survey about personal goals, including a goal sacrifice measure capturing within-person prioritization. Relatedness-predominant goals were prioritized over competence- and autonomy-predominant goals; this pattern was not accounted for by between-need differences in commitment and motivation regulation. People need autonomy, competence, and relatedness for optimal functioning, but in the face of limited resources they may prioritize goals that are predominately relevant to relatedness.     

Moral responsibility and respect for autonomy: meeting the communitarian challenge.

The principle of respect for autonomy has come under increasing attack both within health care ethics, specifically, and as part of the more general communitarian challenge to predominantly liberal values. This paper will demonstrate the importance of respect for autonomy for the social practice of assigning moral responsibility and for the development of moral responsibility as a virtue. Guided by this virtue, the responsible exercise of autonomy may provide a much-needed connection between the individual and the community.     

人的尊严与生命伦理

“尊严”是频繁出现在生命伦理学中的一个概念,但关国学者麦克琳却在最近认为,尊严在生命伦理学中是个无用的概念,可以毫无损失地用其它概念,比如尊重人的自主性概念所代替。反驳了麦克琳的观点,定义了尊严的含义,认为生命伦理学的使命就是在当代生命科技高度发达的情况下如何尊重和保护人的尊严。