The development of infant-caregiver relationships in captive common marmosets (Callithrix jacchus)

The growing independence of infant common marmosets from their caregivers is promoted primarily by their caregivers, who increasingly often prevent the infants from climbing onto them and decreasingly often pick the infants up. Infants achieve independence from their mothers, fathers, and older siblings at different rates and develop characteristically different relationships with them. Infants that are most rejected by caregivers spend the least time on them. When rejected by their parents, infants tend to spend their time with their twins, rather than seeking to climb onto other caregivers. Caregivers do not compensate for unduly large or small amounts of care given by other members of the group. It is argued that if we are to understand the development of caregiver-infant relationships in species with multiple caregivers, we must discover the rules by which infants assess the amount of care they perceive themselves to have received and caregivers assess the amount of care they perceive themselves to have offered. The implications of a simple model based on expected levels of caregiving and careseeking are explored, particularly with respect to competition and compensation.     

Family solidarity and informal care: the case of care for people with dementia

According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role.     

Disabling violence: intellectual disability and the limits of ethical engagement

Those giving care to people with intellectual disabilities in the United Kingdom are obliged to drive bad forms of intimacy, such as abuse, out of the caring relationship. They must also enable these individuals to find positive forms of intimacy through reciprocal relationships such as friendships. These two aims are normally separated, but in an organization called L'Arche UK, they are combined in the same relationship when caregivers pursue reciprocal friendships with those they support. What happens to this ethical project when those with intellectual disabilities are violent to their caregivers? Trying to pursue intimate engagement in this context has the unexpected result of creating distrustful and tense relationships, which raises questions not only about why this ethical project goes so wrong, but also about what it would mean for it to go right: that is, what a richer and fully positive reciprocity between limited and complex human beings would actually look like in practice.     

Uncertainties about 'painless' animals

Macer explores whether it is possible to genetically alter animals to reduce or eliminate their capacity to feel pain, whether it would be ethical to do so, and how we would regard animals that do not feel pain. A possible use for such animals would be as subjects for laboratory research. Among the scientific, philosophical, and ethical uncertainties of pain that Macer considers are: can we define pain? how do we measure pain and anxiety? is pain always related to suffering? what is the minimum level of pain that a being must be able to feel before we reach the conclusion that it should not be used by other beings? are we justified in using beings that do not feel pain when we would not be if they did feel pain and suffer from it?     

Dilemmas in international research and the value of practical wisdom

When conducting research in an international setting, in a country different than that of the researcher, unpredictable circumstances can arise. A study conducted by a novice North American researcher with a vulnerable population in northern Ghana highlights these happenings with an emphasis placed on the ethical challenges encountered. An illustration from the research is used to highlight an ethical dilemma while in the field, and how utilizing a moral decision‐making framework can assist in making choices about a participant's right to autonomy, privacy, and confidentiality during the research process. Moral frameworks, however, can never be enough to solve a dilemma since guidelines only describe what to aim for and not how to interpret or use them. Researchers must therefore strive to move beyond these frameworks to employ practical wisdom or phronesis so to combine the right thing to do with the skill required to figure out what the right choice is. The skill of practical wisdom must be acquired because without it international researchers indecisively fumble around with good intentions, often leaving a situation in worse shape than they found it.     

Cultural competency--the caregiver connection

Healthcare that is respectful and ethical must also be culturally competent, and a variety of tools are available to empower caregivers to provide culturally competent care. This article reviews the tools that the University of Michigan Health Care System's Program for Multicultural Health provides to caregivers throughout its many services. Cultural competency begins with self-awareness and knowledge, but it is also to embark upon a lifelong journey. Progress is cumulative, and assessment is an important part of the process.     

The Ethical and Legal Framework for the Decision Not to Resuscitate

Practicing physicians are frequently faced with the question of whether or not to institute cardiopulmonary resuscitation in case of cardiac or respiratory arrest in a patient in hospital. Medical training has usually not included any systematic analysis of this issue from either an ethical or a legal standpoint. Many physicians may be unaware that ethical and legal principles, as well as professional guidelines, exist to guide such decision making. In practice, physicians make this decision without the benefit of training in ethical analysis. The problem is especially acute in teaching hospitals when young physicians unacquainted with formal ethics or the law must often make decisions emergently. Studies show some discrepancy between ethical and legal principles and the actual decision making by physicians. For this reason, we recommend an approach that will enable physicians to make and implement decisions not to resuscitate that are consistent with current ethical and legal standards.     

Bioethics and biotechnology

Biotechnology is at the intersection of science and ethics. Technological developments are shaped by an ethical vision, which in turn is shaped by available technology. Much in biotechnology can be celebrated for how it benefits humanity. But technology can have a darker side. Biotechnology can produce unanticipated consequences that cause harm or dehumanise people. The ethical implications of proposed developments must be carefully examined. The ethical assessment of new technologies, including biotechnology, requires a different approach to ethics. Changes are necessary because new technology can have a more profound impact on the world; because of limitations with a rights-based approach to ethics; because of the importance and difficulty of predicting consequences; and because biotechnology now manipulates humans themselves. The ethical questions raised by biotechnology are of a very different nature. Given the potential to profoundly change the future course of humanity, such questions require careful consideration. Rather than focussing on rights and freedoms, wisdom is needed to articulate our responsibilities towards nature and others, including future generations. The power and potential of biotechnology demands caution to ensure ethical progress.     

Genetic enhancement--a threat to human rights?

Genetic enhancement is the modification of the human genome for the purpose of improving capacities or 'adding in' desired characteristics. Although this technology is still largely futuristic, debate over the moral issues it raises has been significant. George Annas has recently leveled a new attack against genetic enhancement, drawing on human rights as his primary weapon. I argue that Annas' appeal to human rights ultimately falls flat, and so provides no good reason to object to genetic technology. Moreover, this argument is an example of the broader problem of appealing to human rights as a panacea for ethical problems. Human rights, it is often claimed, are 'trumps': if it can be shown that a proposed technology violates human rights, then it must be cast aside. But human rights are neither a panacea for ethical problems nor a trump card. If they are drafted into the service of an argument, it must be shown that an actual human rights violation will occur. Annas' argument against genetic technology fails to do just this. I shall conclude that his appeal to human rights adds little to the debate over the ethical questions raised by genetic technology.     

A Personalist Ontological Approach to Synthetic Biology

Although synthetic biology is a promising discipline, it also raises serious ethical questions that must be addressed in order to prevent unwanted consequences and to ensure that its progress leads toward the good of all. Questions arise about the role of this discipline in a possible redefinition of the concept of life and its creation. With regard to the products of synthetic biology, the moral status that they should be given as well as the ethically correct way to behave towards them are not clear. Moreover, risks that could result from a misuse of this technology or from an accidental release of synthetic organisms into the environment cannot be ignored; concerns about biosecurity and biosafety appear. Here we discuss these and other questions from a personalist ontological framework, which defends human life as an essential value and proposes a set of principles to ensure the safeguarding of this and other values that are based on it.     

Ethics and drug resistance

This paper reviews the dynamics behind, and ethical issues associated with, the phenomenon of drug resistance. Drug resistance is an important ethical issue partly because of the severe consequences likely to result from the increase in drug resistant pathogens if more is not done to control them. Drug resistance is also an ethical issue because, rather than being a mere quirk of nature, the problem is largely a product of drug distribution. Drug resistance results from the over-consumption of antibiotics by the wealthy; and it, ironically, results from the under-consumption of antibiotics, usually by the poor or otherwise marginalized. In both kinds of cases the phenomenon of drug resistance illustrates why health (care)--at least in the context of infectious disease--should be treated as a (global) public good. The point is that drug resistance involves 'externalities' affecting third parties. When one patient develops a resistant strain of disease because of her over- or under-consumption of medication, this more dangerous malady poses increased risk to others. The propriety of free-market distribution of goods subject to externalities is famously dubious--given that the 'efficiency' rationale behind markets assumes an absence of externalities. Market failure in the context of drug resistance is partly revealed by the fact that no new classes of antibiotics have been developed since 1970. I conclude by arguing that the case of drug resistance reveals additional reasons--to those traditionally appealed to by bioethicists--for treating health care as something special when making policy decisions about its distribution.     

You Can't Not Choose: Embracing the Role of Choice in Ecological Restoration

From the moment of its inception, human choice about how to treat the environment is a key part of ecological restoration. Because many, if not most, restoration projects require continual management once established, human choice remains a vital component of restoration projects for their entire life. But ecological restorationists often downplay the role of choice in restoration, partly because we see the choice to restore as obvious and inherently good and partly because we feel the restoration of more natural conditions for a habitat will lessen the impact of human choice over time. Some critics feel the role of human choice in restoration degrades the value of restoration. However, another response to human choice in restoration is to embrace choice, even with the problems it brings, and use choice as a way to more fully engage humans with the environment. If such choices are approached carefully, with recognition of the potential for poor choices, then restorationists can arrive at restorations that are better for both the environment and us.     

Responsibilities in elderly care: Mr Powell's narrative of duty and relations

In Western countries a considerable number of older people move to a residential home when their health declines. Institutionalization often results in increased dependence, inactivity and loss of identity or self-worth (dignity). This raises the moral question as to how older, institutionalized people can remain autonomous as far as continuing to live in line with their own values is concerned. Following Walker's meta-ethical framework on the assignment of responsibilities, we suggest that instead of directing all older people towards more autonomy in terms of independence, professional caregivers should listen to the life narrative of older people and attempt to find out how their personal identity, relations and values in life can be continued in the new setting. If mutual normative expectations between caregivers and older people are not carefully negotiated, it creates tension. This tension is illustrated by the narrative of Mr Powell, a retired successful public servant now living in a residential home. The narrative describes his current life, his need for help, his independent frame of mind, and his encounters with institutional and professional policies. Mr Powell sees himself as a man who has always cared for himself and others, and who still feels that he has to fulfil certain duties in life. Mr Powell's story shows that he is not always understood well by caregivers who respond from a one-sided view of autonomy as independence. This leads to misunderstanding and an underestimation of his need to be noticed and involved in the residential community.     

LIVING TO THE BITTER END? A PERSONALIST APPROACH TO EUTHANASIA IN PERSONS WITH SEVERE DEMENTIA

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas.     

Misunderstanding death on a respirator

As Tom Tomlinson's study indicates, there is considerable misunderstanding and confusion among physicians and nurses working in the area. Brain death is often not well-understood by healthcare professionals and hence inadequately explained to relatives, leaving them confused as to whether their loved-one is alive or dead. Whilst these healthcare professionals are using whole-brain death as the criterion of death, they have no clear understanding of the definition of death which underpins the brain-death criterion. Lack of this philosophical rationale makes the use of the brain-death criterion a mere technicality, rather than the expression of a well-grounded conceptual and ethical understanding. The other difficulty is that a brain-dead respirator patient just does not look dead. This appearance of life, Tomlinson suggests, can trigger deep emotions in caregivers and family members which will compound the intellectual perplexity already felt by them.     

Adversaries at the Bedside: Advance Care Plans and Future Welfare

Advance care planning refers to the process of determining how one wants to be cared for in the event that one is no longer competent to make one's own medical decisions. Some have argued that advance care plans often fail to be normatively binding on caretakers because those plans do not reflect the interests of patients once they enter an incompetent state. In this article, we argue that when the core medical ethical principles of respect for patient autonomy, honest and adequate disclosure of information, institutional transparency, and concern for patient welfare are upheld, a policy that would allow for the disregard of advance care plans is self‐defeating. This is because when the four principles are upheld, a patient's willingness to undergo treatment depends critically on the willingness of her caretakers to honor the wishes she has outlined in her advance care plan. A patient who fears that her caretakers will not honor her wishes may choose to avoid medical care so as to limit the influence of her caretakers in the future, which may lead to worse medical outcomes than if she had undergone care. In order to avoid worse medical outcomes and uphold the four core principles, caregivers who are concerned about the future welfare of their patients should focus on improving advance care planning and commit to honoring their patients’ advance care plans.     

Anonymity and informed consent in artificial procreation: a report from Denmark

The practice of informed consent in biomedicine is so widely spread that it must be considered the most important principle within bioethics, and the most universally appealed to within recent legislation. There seems to be a consensus as to its value in research on autonomous persons, but also a problem concerning its application when dealing with people having a serious mental, social or even physical disability.
Within the field of artificial procreation there are even more problems. Informed written consent is often demanded from anonymous donors of gametes in order to ensure their consent to the legal and moral consequences of their anonymity. The child resulting from the artificial procreation, on the contrary, cannot consent to, nor be informed before being conceived, of the secrecy laid on the identity of its genetic parents. Some countries resolve this problem by allowing the children, when they reach their majority, to obtain some information pertaining to the health or the identity of their genetic parents.
This presents ethical problems. It can be argued that the anonymity of the parents chiefly affects the children, so that an agreement on this point among parents, doctors and others must be regarded as invalid. The paper will argue that a law ensuring the complete anonymity of the parents is disregarding the informed consent and the interests of the children resulting from artificial procreation, and is thus doing more damage to society than good.     

Anonymity and Informed Consent in Artificial Procreation

The practice of informed consent in biomedicine is so widely spread that it must be considered the most important principle within bioethics, and the most universally appealed to within recent legislation. There seems to be a consensus as to its value in research on autonomous persons, but also a problem concerning its application when dealing with people having a serious mental, social or even physical disability.
Within the field of artificial procreation there are even more problems. Informed written consent is often demanded from anonymous donors of gametes in order to ensure their consent to the legal and moral consequences of their anonymity. The child resulting from the artificial procreation, on the contrary, cannot consent to, nor be informed before being conceived, of the secrecy laid on the identity of its genetic parents. Some countries resolve this problem by allowing the children, when they reach their majority, to obtain some information pertaining to the health or the identity of their genetic parents.
This presents ethical problems. It can be argued that the anonymity of the parents chiefly affects the children, so that an agreement on this point among parents, doctors and others must be regarded as invalid. The paper will argue that a law ensuring the complete anonymity of the parents is disregarding the informed consent and the interests of the children resulting from artificial procreation, and is thus doing more damage to society than good.     

The Collaborative Image of The City: Mapping the Inequality of Urban Perception

A traveler visiting Rio, Manila or Caracas does not need a report to learn that these cities are unequal; she can see it directly from the taxicab window. This is because in most cities inequality is conspicuous, but also, because cities express different forms of inequality that are evident to casual observers. Cities are highly heterogeneous and often unequal with respect to the income of their residents, but also with respect to the cleanliness of their neighborhoods, the beauty of their architecture, and the liveliness of their streets, among many other evaluative dimensions. Until now, however, our ability to understand the effect of a city''s built environment on social and economic outcomes has been limited by the lack of quantitative data on urban perception. Here, we build on the intuition that inequality is partly conspicuous to create quantitative measure of a city''s contrasts. Using thousands of geo-tagged images, we measure the perception of safety, class and uniqueness; in the cities of Boston and New York in the United States, and Linz and Salzburg in Austria, finding that the range of perceptions elicited by the images of New York and Boston is larger than the range of perceptions elicited by images from Linz and Salzburg. We interpret this as evidence that the cityscapes of Boston and New York are more contrasting, or unequal, than those of Linz and Salzburg. Finally, we validate our measures by exploring the connection between them and homicides, finding a significant correlation between the perceptions of safety and class and the number of homicides in a NYC zip code, after controlling for the effects of income, population, area and age. Our results show that online images can be used to create reproducible quantitative measures of urban perception and characterize the inequality of different cities.