Women who had had breast cancer and had been enrolled in a large genetic breast cancer epidemiological study were interviewed about their experience of participation in the study, their attitudes to the confidentiality of data, and the feedback of personal and general research results. Collection of family history information seemed more salient in indicating the genetic nature of the study than the enrolment information sheet. There were no concerns about confidentiality.While participants would have welcomed general feedback about the results of (...) the study and were critical that this had not been provided, the feedback of personal information proved complicated and, sometimes, difficult. It is suggested that individual feedback of genetic test information in epidemiological studies should be undertaken only when there are specific reasons. (shrink)

This paper concludes a special feature of Sustainability Science that explores a broad range of social value theoretical traditions, such as religious studies, social psychology, indigenous knowledge, economics, sociology, and philosophy. We introduce a novel transdisciplinary conceptual framework that revolves around concepts of 'lenses' and 'tensions' to help navigate value diversity. First, we consider the notion of lenses: perspectives on value and valuation along diverse dimensions that describe what values focus on, how their sociality is envisioned, and what epistemic and (...) procedural assumptions are made. We characterise fourteen of such dimensions. This provides a foundation for exploration of seven areas of tension, between: (1) the values of individuals vs collectives; (2) values as discrete and held vs embedded and constructed; (3) value as static or changeable; (4) valuation as descriptive vs normative and transformative; (5) social vs relational values; (6) different rationalities and their relation to value integration; (7) degrees of acknowledgment of the role of power in navigating value conflicts. In doing so, we embrace the 'mess' of diversity, yet also provide a framework to organise this mess and support and encourage active transdisciplinary collaboration. We identify key research areas where such collaborations can be harnessed for sustainability transformation. Here it is crucial to understand how certain social value lenses are privileged over others and build capacity in decision-making for understanding and drawing on multiple value, epistemic and procedural lenses. (shrink)

This paper concludes a special feature of Sustainability Science that explores a broad range of social value theoretical traditions, such as religious studies, social psychology, indigenous knowledge, economics, sociology, and philosophy. We introduce a novel transdisciplinary conceptual framework that revolves around concepts of ‘lenses’ and ‘tensions’ to help navigate value diversity. First, we consider the notion of lenses: perspectives on value and valuation along diverse dimensions that describe what values focus on, how their sociality is envisioned, and what epistemic and (...) procedural assumptions are made. We characterise fourteen of such dimensions. This provides a foundation for exploration of seven areas of tension, between: (1) the values of individuals vs collectives; (2) values as discrete and held vs embedded and constructed; (3) value as static or changeable; (4) valuation as descriptive vs normative and transformative; (5) social vs relational values; (6) different rationalities and their relation to value integration; (7) degrees of acknowledgment of the role of power in navigating value conflicts. In doing so, we embrace the ‘mess’ of diversity, yet also provide a framework to organise this mess and support and encourage active transdisciplinary collaboration. We identify key research areas where such collaborations can be harnessed for sustainability transformation. Here it is crucial to understand how certain social value lenses are privileged over others and build capacity in decision-making for understanding and drawing on multiple value, epistemic and procedural lenses. (shrink)

The setting is a garden in Elysium. The sun is shining. A rich verdant lawn is surrounded by flower beds and flowering bushes, with a grove of magnificent trees behind. Beyond, a large lake and in the distance high mountains. Five comfortable garden chairs are placed in the shade of some trees. There is a low table on which are placed a wine decanter and glasses, three of which are half full. Richard, Jill and Frank are deep in discussion.

Ethical problems with stakeholder relationships sometimes occur because organizational members are operating out of narrowly scripted organizational routines that do not include an explicit ethical component. In this article we describe methods of single-loop, double-loop, and triple-loop action learning that aim at helping organizational members develop understandings that incorporate conscious ethical considerations in stakeholder relationships. We describe the extent to which these methods achieve "second-order" change in the direction of ethical stakeholder relationships, give examples of the use of each of (...) the methods, and we consider their strengths and limitations for achieving the desired change. (shrink)

The principle of informed consent is so firmly established in bioethics and biomedicine that the term was soon bowdlerized in common practice, such that engaging in the informed decision-making process with patients or research subjects is now often called “consenting” them. This evolution, from the original concept to the rather questionable coinage that makes consent a verb, reveals not only a loss of rhetorical precision but also a fundamental shift in the potential meaning, value, and implementation of the informed consent (...) process. Too often, the sharing of information has been replaced by the mere acquisition of agreement with the authority ostensibly offering a choice.Scholars of informed consent agree that its salience and its legitimacy derive from a fiduciary duty to inform, in order to respect, protect, and promote autonomous decision making by those to whom the duty is owed. (shrink)

Do the conditions under which promises are made determine whether they ought to be kept? Philosophers have placed a number of conditions on promising which, they hold, must be met in order to make promise‐keeping obligatory. In so doing, they have distinguished valid promises from invalid promises and justified promises from promises that are not justified. Considering such conditions, one by one, we argue that they are mistaken. In the first place, the conditions they lay down are not necessary for (...) either valid or justified promise‐making. In the second place, promises need not meet such conditions in order to create moral obligations. In general, such analyses of promising fail because they suffer from a confusion between promise‐making and promise‐keeping. Philosophers have wrongly supposed that obligations to keep promises are dependent upon, or derivable from, the quality of the promises themselves, at the time they are made, instead of focusing on conditions that must be satisfied at the time when promises are supposed to be kept. It is not the quality of a promise that determines an obligation to keep it but the rightness or wrongness of performing the promised act. (shrink)

Is it ethical to perform a surgery whose purpose is to make a male look like a female or a female to appear male? Is it medically appropriate? Sexual reassignment surgery (SRS) violates basic medical and ethical principles and is therefore not ethically or medically appropriate. (1) SRS mutilates a healthy, non-diseased body. To perform surgery on a healthy body involves unnecessary risks; therefore, SRS violates the principle primum non nocere, “first, do no harm.” (2) Candidates for SRS may believe (...) that they are trapped in the bodies of the wrong sex and therefore desire or, more accurately, demand SRS; however, this belief is generated by a disordered perception of self. Such a fixed, irrational belief is appropriately described as a delusion. SRS, therefore, is a “category mistake”—it offers a surgical solution for psychological problems such as a failure to accept the goodness of one’s masculinity or femininity, lack of secure attachment relationships in childhood with same-sex peers or a parent, self-rejection, untreated gender identity disorder, addiction to masturbation and fantasy, poor body image, excessive anger, and severe psychopathology in a parent. (3) SRS does not accomplish what it claims to accomplish. It does not change a person’s sex; therefore, it provides no true benefit. (4) SRS is a “permanent,” effectively unchangeable, and often unsatisfying surgical attempt to change what may be only a temporary (i.e., psychotherapeutically changeable) psychological/psychiatric condition. National Catholic Bioethics Quarterly 9.1 (Spring2009): 97–125. (shrink)

Although death by neurologic criteria is legally recognized throughout the United States, state laws and clinical practice vary concerning three key issues: the medical standards used to determine death by neurologic criteria, management of family objections before determination of death by neurologic criteria, and management of religious objections to declaration of death by neurologic criteria. The American Academy of Neurology and other medical stakeholder organizations involved in the determination of death by neurologic criteria have undertaken concerted action to address variation (...) in clinical practice in order to ensure the integrity of brain death determination. To complement this effort, state policymakers must revise legislation on the use of neurologic criteria to declare death. We review the legal history and current laws regarding neurologic criteria to declare death and offer proposed revisions to the Uniform Determination of Death Act and the rationale for these recommendations. (shrink)