The online version of the original article can be found under doi:10.1007/s11948-007-9045-2.

In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesAustin Morris, Lisa P., Jeanne Kerwin, Jean Watson, Eve Makoff, Brent R. Carr, Anonymous One, Michelle Prong, Laura J. Hoeksema, Tracy R. Wilson, Frances Rieth Maynard, Laura A. Katers, and Maggie Taylor• Against Their Wishes: The Gift of a Goodbye• Lisa’s Story• Unbefriended• The Clinical Ethics Consult: Transforming Ambivalence to Action• Side Stepping The Issues: Disappointment With An Ethics Consult For A Medically (...) High Risk Patient• My Father Dies Alone• Whose Voice Matters? The Role of Ethics Consultation in Supporting the 16-Year-Old Healthcare Decision-Maker of a Critically Ill Neonate• The Healing Power of an Ethics Consult• Clinical Ethicists: Can They Help Families in Their Times of Need?• “It’s All Personal”• Fault Lines• Difficult, Difficult, Lemon, DifficultCopyright © 2024 Johns Hopkins University Press... (shrink)

In order to show how Michel Serres’s work diverges from traditional Western philosophy, this article explores a multitude of texts and contexts against which Serres might be better understood. Most starkly, Serres’s work diverges from the eighteenth and nineteenth century Germanic tradition of Bildung, meaning cultivation through introspection, apolitical thought and character building through education. Serres’s moves away from ego-centric thought to eco-centric thought more akin to what Gregory Bateson called an ecology of mind. That is, Serres’s integrates—in a more (...) ecological fashion—poetry, science, the arts, ecology and politics to raise philosophical questions. Further, this author suggests that Serres’s reference to the nineteenth century poem Pierrot Lunaire ) serves as a trope for Serres’s over-arching philosophy. Pierrot is an artist, a sage, an outlier, a Hermes-like figure who breaks with tradition. Arnold Schoenberg’s atonal performance piece, spoken and sung, shattered the boundaries of classical music. Like Schoenberg’s work, Serres’s work, both in style and content, shatters the boundaries of traditional philosophy. Serres’s breaks open a new paradigm in philosophy. (shrink)

French poststructuralist philosopher Michel Serres writes about knowledge production throughout his work. He is of particular importance to educationists because the production of knowledge...

People are less willing to accept bets about an event when they do not know the true probability of that event. Such uncertainty aversion has been used to explain certain economic phenomena. This paper considers how far standard private information explanations (with strategic decisions to accept bets) can go in explaining phenomena attributed to uncertainty aversion. This paper shows that if two individuals have different prior beliefs about some event, and two sided private information, then each individual’s willingness to bet (...) will exhibit a bid ask spread property. Each individual is prepared to bet for the event, at sufficiently favorable odds, and against, at sufficiently favorable odds, but there is an intermediate range of odds where each individual is not prepared to bet either way. This is only true if signals are distributed continuously and sufficiently smoothly. It is not true, for example, in a finite signal model. (shrink)

Interventions to decrease acquisition and transmission of sexually transmitted diseases among African American women using text messages versus small-group delivery modalities pose distinct research risks and benefits. Determining the relative risk–benefit ratio of studies using these different modalities has relied on the expertise of investigators and their institutional review boards. In this study, African American women participated in focus groups and surveys to elicit and compare risks and benefits inherent in these two intervention delivery modalities, focusing on issues such as (...) convenience, privacy, and stigma of participation. Some risk/benefit variables were implicated in willingness to participate the two intervention modalities. (shrink)

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk‐benefit profile. (shrink)

The aim of the paper is to propose a preferences representation model under risk where risk perception can be past experience dependent. A first step consists in considering a one period decision problem where individual preferences are no more defined only on decisions but on pairs (decision, past experience). The obtained criterion is used in the construction of a dynamic choice model under risk. The paper ends with an illustrative example concerning insurance demand. It appears that our model allows to (...) explain modifications in the insurance demand behavior over time observed on the insurance markets for catastrophic risk and difficult to justify with standard models. (shrink)

The physical distancing measures necessitated by COVID-19 have resulted in a severe withdrawal from the patterns of daily life, necessitating significantly reduced contact with other people. To many, such withdrawal can be a major cause of distress. But, to some, this sort of withdrawal is an integral part of growth, a pathway to a more enriching life. The present study uses a sequential explanatory QUAN-qual design to investigate whether people who felt that their lives had changed for the better after (...) being forced to engage in physical distancing, what factors predicted such well-being, and how they spent their time to generate this sense of well-being. We invited 614 participants who reported closely following physical distancing recommendations to complete a survey exploring this topic. Our analyses, after controlling for all other variables in the regression model, found a greater positive association between presence of meaning in life, coping style, and self-transcendent wisdom and residualized current well-being accounting for retrospective assessments of well-being prior to physical distancing. An extreme-case content analysis of participants' personal projects found that participants with low self-transcendent wisdom reported more survival-oriented projects (e.g., acquiring groceries or engaging in distracting entertainments), while participants reporting high self-transcendent wisdom reported more projects involving deepening interactions with other people, especially family. Our findings suggest a more nuanced pathway from adversity to a deeper sense of well-being by showing the importance of not merely coping with adversity, but truly transcending it. (shrink)

We report in this paper the result of three experiments on risk, ambiguity and time attitude. The first two differed by the population considered (students vs. general population) while the third one used a different protocol and concerned students and portfolio managers. We find quite a lot of heterogeneity at the individual level. Of principal interest was the elicitation of risk, time and ambiguity attitudes and the relationship among these (model free) measures. We find that on the student population, there (...) is essentially no correlation. A non negligible fraction of the population behaves in an extremely cautious manner in the risk and ambiguity domain. When we drop this population from the sample, the correlation between our measures is also non significant. We also raise three questions linked to measurement of ambiguity attitudes that come out from our data sets. (shrink)

We present an annotated bibliography of peer reviewed scientific research highlighting the human health, animal welfare, and environmental risks associated with genetic modification. Risks associated with the expression of the transgenic material include concerns over resistance and non-target effects of crops expressing Bt toxins, consequences of herbicide use associated with genetically modified herbicide-tolerant plants, and transfer of gene expression from genetically modified crops through vertical and horizontal gene transfer. These risks are not connected to the technique of genetic modification as (...) such, but would be present for any conventionally produced crops with the same heritable traits. In contrast, other risks are a direct consequence of the method used in gene manipulation. These come about because of the unstable nature of the transgene and vectors used to insert it, and because of unpredictable interactions between the transgene and the host genome. The debate over the release of genetically modified organisms is not merely a scientific one; it encompasses economics, law, ethics, and policy. Any discussion on these levels does, however, need to be informed by sound science. We hope that the scientific references provided here will provide a useful starting point for further debate. (shrink)

Algorithmic predictions are promising for insurance companies to develop personalized risk models for determining premiums. In this context, issues of fairness, discrimination, and social injustice might arise: Algorithms for estimating the risk based on personal data may be biased towards specific social groups, leading to systematic disadvantages for those groups. Personalized premiums may thus lead to discrimination and social injustice. It is well known from many application fields that such biases occur frequently and naturally when prediction models are applied to (...) people unless special efforts are made to avoid them. Insurance is no exception. In this paper, we provide a thorough analysis of algorithmic fairness in the case of insurance premiums. We ask what “fairness” might mean in this context and how the fairness of a premium system can be measured. For this, we apply the established fairness frameworks of the fair machine learning literature to the case of insurance premiums and show which of the existing fairness criteria can be applied to assess the fairness of insurance premiums. We argue that two of the often-discussed group fairness criteria, independence (also called statistical parity or demographic parity) and separation (also known as equalized odds), are not normatively appropriate for insurance premiums. Instead, we propose the sufficiency criterion (also known as well-calibration) as a morally defensible alternative that allows us to test for systematic biases in premiums towards certain groups based on the risk they bring to the pool. In addition, we clarify the connection between group fairness and different degrees of personalization. Our findings enable insurers to assess the fairness properties of their risk models, helping them avoid reputation damage resulting from potentially unfair and discriminatory premium systems. (shrink)

Fishburn and Vickson showed that, when applied to random alternatives with an equal mean, 3rd-degree and decreasing absolute risk aversion stochastic dominances represent equivalent rules. The present paper generalizes this result to higher degrees. Specifically, higher-degree stochastic dominance rules and common preference by all decision makers with decreasing higher-order absolute risk aversion are shown to coincide under appropriate constraints on the respective moments of the random variables to be compared.

The existing literature on savings, insurance, and portfolio choices under risk has revealed that quite often comparative statics results depend, among other things, upon the values of the coefficients of relative risk aversion and relative prudence. More specifically the benchmark values for these coefficients are, respectively, one and two. Recently, several papers investigated constraints on the higher degree extensions of the coefficients of relative risk aversion and of relative prudence. The present work provides a unified approach to this question based (...) on the concept of elementary correlation increasing transformations, allowing for a better understanding of changes in risk in the multiplicative case. (shrink)

While innovations have fostered the mass production of food at low costs, there are externalities or side effects associated with high-volume food processing. We focus on foodborne illness linked to two commodities: ground beef and bagged salad greens. In our analysis, we draw from the concepts of risk, reflexive modernization, and techniques of ethical neutralization. For each commodity, we find that systems organized for industrial goals overlook how production models foster cross-contamination and widespread outbreaks. Responses to outbreaks tend to rely (...) on technological fixes, which do not constitute the reflexive change needed to holistically and effectively address foodborne illness in the long term. We contend that powerful anti-reflexivity movements resist calls for reform and successfully maintain industrial goals and organization. Actions that thwart changes in agrifood systems to better protect consumers are unethical, yet they continue to be successful. We argue that specific techniques of ethical neutralization play an important part in their success. Research on anti-reflexivity and techniques of neutralization will serve to further expose the ethical issues associated with the industrial agrifood system and foster new guiding principles and organizational designs for food production. (shrink)

In this paper, we consider the composition of an optimal portfolio made of two dependent risky assets. The investor is first assumed to be a risk-averse expected utility maximizer, and we recover the existing conditions under which all these investors hold at least some percentage of their portfolio in one of the assets. Then, we assume that the decision maker is not only risk-averse, but also prudent and we obtain new minimum demand conditions as well as intuitively appealing interpretations for (...) them. Finally, we consider the general case of investor’s preferences exhibiting risk apportionment of any order and we derive the corresponding minimum demand conditions. As a byproduct, we obtain conditions such that an investor holds either a positive quantity of one of the assets or a proportion greater than 50 %. (shrink)

The present note first discusses the concept of s-convex pain functions in decision theory. Then, the economic behavior of an agent with such a pain function is represented through the comparison of some recursive lotteries.

The World Health Organisation recently listed air pollution as the most significant threat to human health. Air pollution comprises particulate matter (PM), metals, black carbon and gases such as ozone (O3), nitrogen dioxide (NO2) and carbon monoxide (CO). In addition to respiratory and cardiovascular disease, PM exposure is linked with increased risk of neurodegeneration as well as neurodevelopmental impairments. Critically, studies suggest that PM crosses the placenta, making direct in utero exposure a reality. Rodent models reveal that neuroinflammation, neurotransmitter imbalance (...) and oxidative stress are triggered following gestational/early life exposure to PM, and may be exacerbated by concomitant mitochondrial dysfunction. Gestational PM exposure (potentiated by mitochondrial impairment in the metabolically active neonatal brain) not only impacts neurodevelopment but may sensitise the brain to subsequent cognitive impairment. Having reviewed this field, we conclude that strategies are urgently required to reduce exposure to PM during this sensitive developmental period. (shrink)

Both Socrates and the pseudonymous author of Either/Or II hold that we should never allow ourselves to be motivated by anything other than doing what is ethical. For both of them the reason why we must be radically committed to ethics is that we need to keep our souls under control. They think that our passion for an object of desire creates a predisposition to desire the same sort object in the future — the greater the passion, the stronger the (...) predisposition. Thus if we are not careful about what we allow ourselves to feel passion, we risk living our lives for the sake of meaningless things. (shrink)

We consider a situation where an individual is facing an uncertain situation, but may costly alter his knowledge of the uncertainties. We study in this context how risk aversion may modify the individual search behavior. We consider a one-armed bandit problem (where one arm is safe and the other is risky) and study how the agent risk aversion can change the sequence of arms selected. The main result is that when the utility function is more concave, the agent has more (...) chances to select the safe arm. We also discuss how search is affected by risk aversion. (shrink)

In this paper we argue that transparency of machine learning algorithms, just as explanation, can be defined at different levels of abstraction. We criticize recent attempts to identify the explanation of black box algorithms with making their decisions (post-hoc) interpretable, focusing our discussion on counterfactual explanations. These approaches to explanation simplify the real nature of the black boxes and risk misleading the public about the normative features of a model. We propose a new form of algorithmic transparency, that consists in (...) explaining algorithms as an intentional product, that serves a particular goal, or multiple goals (Daniel Dennet’s design stance) in a given domain of applicability, and that provides a measure of the extent to which such a goal is achieved, and evidence about the way that measure has been reached. We call such idea of algorithmic transparency “design publicity.” We argue that design publicity can be more easily linked with the justification of the use and of the design of the algorithm, and of each individual decision following from it. In comparison to post-hoc explanations of individual algorithmic decisions, design publicity meets a different demand (the demand for impersonal justification) of the explainee. Finally, we argue that when models that pursue justifiable goals (which may include fairness as avoidance of bias towards specific groups) to a justifiable degree are used consistently, the resulting decisions are all justified even if some of them are (unavoidably) based on incorrect predictions. For this argument, we rely on John Rawls’s idea of procedural justice applied to algorithms conceived as institutions. (shrink)

Circumcision of males represents a surgical “vaccine“ against a wide variety of infections, adverse medical conditions and potentially fatal diseases over their lifetime, and also protects their sexual partners. In experienced hands, this common, inexpensive procedure is very safe, can be pain‐free and can be performed at any age. The benefits vastly outweigh risks. The enormous public health benefits include protection from urinary tract infections, sexually transmitted HIV, HPV, syphilis and chancroid, penile and prostate cancer, phimosis, thrush, and inflammatory dermatoses. (...) In women circumcision of the male partner provides substantial protection from cervical cancer and chlamydia. Circumcision has socio‐sexual benefits and reduces sexual problems with age. It has no adverse effect on penile sensitivity, function, or sensation during sexual arousal. Most women prefer the circumcised penis for appearance, hygiene and sex. Given the convincing epidemiological evidence and biological support, routine circumcision should be highly recommended by all health professionals. BioEssays 29:1147–1158, 2007. © 2007 Wiley Periodicals, Inc. (shrink)

This volume collects a series of lectures given by the renowned French thinker Michel Foucault late in his career. The book is composed of two parts: a talk, Parrēsia, delivered at the University of Grenoble in 1982, and a series of lectures entitled “Discourse and Truth,” given at the University of California, Berkeley in 1983, which appears here for the first time in its full and correct form. Together, they provide an unprecedented account of Foucault’s reading of the Greek concept (...) of parrēsia, often translated as “truth-telling” or “frank speech.” The lectures trace the transformation of this concept across Greek, Roman, and early Christian thought, from its origins in pre-Socratic Greece to its role as a central element of the relationship between teacher and student. In mapping the concept’s history, Foucault’s concern is not to advocate for free speech; rather, his aim is to explore the moral and political position one must occupy in order to take the risk to speak truthfully. These lectures—carefully edited and including notes and introductory material to fully illuminate Foucault’s insights—are a major addition to Foucault’s English language corpus. (shrink)

International documents on ethical conduct in clinical research have in common the principle that potential harms to research participants must be proportional to anticipated benefits. The anticipated benefits that can justify human research consist of direct benefits to the research participant, and societal benefits, also called social value. In first-in-human research, no direct benefits are expected and the benefit component of the risks-benefit assessment thus merely exists in social value. The concept social value is ambiguous by nature and is used (...) in numerous ways in the research ethics literature. Because social value justifies involving human participants, especially in early human trials, this is problematic. (shrink)

Here, we provide an ethical analysis of discrimination in private insurance to guide the application of non-discriminatory algorithms for risk prediction in the insurance context. This addresses the need for ethical guidance of data-science experts, business managers, and regulators, proposing a framework of moral reasoning behind the choice of fairness goals for prediction-based decisions in the insurance domain. The reference to private insurance as a business practice is essential in our approach, because the consequences of discrimination and predictive inaccuracy in (...) underwriting are different from those of using predictive algorithms in other sectors. Here we focus on the trade-off in the extent to which one can pursue indirect non-discrimination versus predictive accuracy. The moral assessment of this trade-off is related to the context of application—to the consequences of inaccurate risk predictions in the insurance domain. (shrink)

Sexually dimorphic mate selection strategies were examined in 200 university students reporting their willingness to engage in casual sexual encounters with hypothetical individuals of the opposite sex. Using a questionnaire format, the possibility of forming a long-term relationship was manipulated, while risk of disease, pregnancy, and detection was eliminated across all conditions. In addition, potential partners varied in level of attractiveness, and in personality and behavioral characteristics. As expected, men reported a greater anticipated willingness to engage in sexual intercourse across (...) all conditions compared with women. The possibility of forming a long-term relationship elevated women’s, but not men’s, willingness for sexual intercourse. While a potential partner’s attractiveness had a significant positive overall effect on responses, reducing their relative attractiveness had a greater negative impact on men’s responses. Reference to the parental qualities of a potential partner significantly increased women’s, but not men’s, anticipated willingness for sexual intercourse. Describing a hypothetical partner as non-aggressive marginally increased women’s willingness and did not affect men’s responses. The wording of items relevant to this condition may have resulted in the potential partner sounding "wimpy" rather than nonaggressive, and this may have reduced the expected effect of this manipulation. The possibility that women may trade off personality and behavioral characteristics with attractiveness to a greater degree than men when assessing potential mates is considered. (shrink)

Ethics applications to conduct research with children who have experienced domestic violence will frequently raise a red flag to ethics committees about the potential for risk and re-traumatization. On the other hand, such sensitive research can enable a hidden, marginalized population to have their voices heard. It can deliver findings about children’s lives that can inform otherwise adult-centric research, policy and practice initiatives. The authors highlight ethical concerns and practical solutions using examples from domestic violence, family law and child abuse (...) research with children. Ethical planning is explored according to methodologies, context and whether the violence has been named. Also discussed are consent procedures, confidentiality and the development of protocols for disclosure, distress, safety and risk assessment, which support ethical and safe research with children. (shrink)

Research on human genetic variation can present collective risks to all members of a socially identifiable group. Research that associates race or ethnicity with a genetic disposition to disease, for example, presents risks of group discrimination and stigmatization. To better protect against these risks, some have proposed supplemental community-based reviews of research on genetic differences between populations. The assumption behind these appeals is that involving members of study populations in the review process can help to identify and minimize collective risks (...) that otherwise could go unnoticed. In contrast to this position, critics have argued that supplemental community-based reviews are unnecessary, impractical, and morally problematic. This paper is our attempt to advance this debate by distinguishing the various goals of community review and the forms that it can take. (shrink)

In a recent issue of the Journal of Medical Ethics, Svoboda and Van Howe commented on the 2012 change in the American Academy of Pediatrics policy on newborn male circumcision, in which the AAP stated that benefits of the procedure outweigh the risks. Svoboda and Van Howe disagree with the AAP conclusions. We show here that their arguments against male circumcision are based on a poor understanding of epidemiology, erroneous interpretation of the evidence, selective citation of the literature, statistical manipulation (...) of data, and circular reasoning. In reality, the scientific evidence indicates that male circumcision, especially when performed in the newborn period, is an ethically and medically sound low-risk preventive health procedure conferring a lifetime of benefits to health and well-being. Policies in support of parent-approved elective newborn circumcision should be embraced by the medical, scientific and wider communities. (shrink)

What Kyselo calls the “body-social problem” concerns whether to individuate the human self in terms of its bodily aspects or social aspects. In her view, either approach risks privileging one dimension while reducing the other to a mere contextual element. However, she proposes that principles from enactivism can help us to find a middle ground and solve the body-social problem. Here Kyselo looks to the notions of “needful freedom” and "individuation through and from a world" and extends them from the (...) realm of biological individuation to an individuation in terms of social interactions. However, I will argue that because Kyselo’s solution to the body-social problem downplays the role of the living body, it actually is in tension with the enactivist framework. First, while enactivism places the living body at the center of selfhood and subjectivity, Kyselo’s account treats the living body as mere means and mediator. Second, her claim that the self is socially enacted and individuated is in tension with the enactivist conception of autonomous agency, which centers on the autonomous organization of the living body. However, suppose we grant Kyselo’s claim that we are necessarily social beings, but claim that the mind of a minded human animal constitutively extends to the limits of its living organismic body, but no further. My proposed “life shaping” thesis says that the self is not just essentially embodied, but also partially causally determined or shaped by social interactions, and thoroughly influenced by social norms and values. The life shaping thesis can explain how the self is individuated biologically, in terms of the autonomous organization of the living body, but nonetheless deeply embedded in the social world. (shrink)

Motivated by exploitation concerns, we argue for the importance of participant engagement in basic human intracranial electrophysiology research. This research takes advantage of unique neurosurgical opportunities to better understand complex systems of the human brain, but it also exposes participants to additional risks without immediate therapeutic intent. We argue that understanding participant values and incorporating their perspectives into the research process may help determine whether and to what extent research practices and the resulting distributions of risks and benefits constitute exploitation (...) and contribute to building a brain research paradigm that is genuinely responsive to participant values. More broadly, we highlight the importance of paying attention to participant interests in non-therapeutic brain research. (shrink)

This article presents data from the Growing up with Media study related to the implementation of a risk reduction protocol that resulted in three groups of youth: low-risk youth (no flags), youth flagged because of violence involvement and not clinically referred; and flagged youth who were referred to a team clinician due to additional risk considerations. Data are from 3,979 US youth 14–15 years of age recruited through social media between October 2018-August 2019. Four in ten youth were flagged for (...) review. Findings suggest that this methodology of identifying and reviewing cases appears to be working as intended: Not only did referred youth have more flags than non-referred youth, but post-hoc analyses suggested that these youth also had higher rates of psychosocial problems (e.g., non-victimization adversity, substance use, and depressed mood). The implementation of a risk reduction protocol such as the one described in this article adds a layer of human subject protection beyond the more standard list of websites and hotlines provided to all participants in most studies. This protocol leads the way for future studies to recreate a similar process to address concerning responses collected from survey research. (shrink)

Pediatric participation in non-therapeutic research that poses greater than minimal risk has been the subject of considerable thought-provoking debate in the research ethics literature. While the need for more pediatric research has been called morally imperative, and concerted efforts have been made to increase pediatric medical research, the importance of protecting children from undue research risks remains paramount.United States research regulations are derived largely from the deliberations and report of the National Commission for the Protection of Human Subjects of Biomedical (...) and Behavioral Research. The authors of this report specifically designated children as a vulnerable population and suggested additional protections, most of which became U.S. law. One of the more contested sets of regulations surrounds non-therapeutic research, e.g., research that does not offer the potential for direct benefit to participants. Federal regulations allow local Institutional Review Boards to approve non-therapeutic research posing a minor increase above minimal risk when it involves children who have the disease or medical condition that the research addresses. (shrink)

Research focused on the prodromal period prior to the onset of psychosis is essential for the further development of strategies for early detection, early intervention, and disease pre-emption. Such efforts necessarily require the enrollment of individuals who are at risk of psychosis but have not yet developed a psychotic illness into research and treatment protocols. This work is becoming increasingly internationalized, which warrants special consideration of cultural differences in conceptualization of mental illness and international differences in health care practices and (...) rights regarding research participation. The process of identifying and requesting informed consent from individuals at elevated risk for psychosis requires thoughtful communication about illness risk and often involves the participation of family members. Empirical studies of risk reasoning and decisional capacity in young people and individuals with psychosis suggest that most individuals who are at-risk for psychosis can adequately provide informed consent; however ongoing improvements to tools and procedures are important to ensure that this work proceeds with maximal consideration of relevant ethical issues. This review provides a discussion of these issues in the context of international research efforts. (shrink)

This paper reviews common advertising claims by egg freezing companies and evaluates the medical evidence behind those claims. It then surveys legal standards for truth in advertising, including FTC and FDA regulations and the First Amendment right to free speech. Professional standards for medical advertising, such as guidelines published by the American Society for Reproductive Medicine, the American College of Obstetricians and Gynecologists, and the American Medical Association, are also summarized. A number of claims, many of which relate to the (...) targeting of younger women for eOC, are found to breach legal and ethical standards for truth in advertising. The ethical implications of misleading advertising claims are also discussed, and the central narrative woven by OC ads — that egg freezing is empowering to women — is examined. The paper concludes that a more balanced approach to the risks and benefits of OC is necessary to truly respect women's autonomy. Moreover, justice requires us to look beyond a medical procedure accessible only to a minority of women in order to address inequities in the workplace. (shrink)

Over the past two decades, the epidemic of HIV/AIDS has challenged the public health community to fundamentally rethink the framework for preventing infectious diseases. While much progress has been made on the biomedical front in treatments for HIV infection, prevention still relies on behaviour change. This book documents and explains the remarkable breakthroughs in behavioural research design that have emerged to confront this new challenge: the study of partnership networks.Traditionally, public health research focused on the "knowledge, attitudes, and practices " (...) of individuals, an approach designed for understanding health-related behaviour like seat-belt wearing and cigarette smoking. For HIV and other sexually transmitted infections, however, there are at least two people involved in transmission. This may not seem like a big difference, but in fact it changes everything. First, it means that your risk depends on your partners -- and on their partners, and their partners: it depends on your position in the network of partnerships. Consider, for example, the rise of infections among monogamous women. Second, it means that individuals are not free to simply change their behaviour -- condom use, or abstinence, needs to be negotiated with a partner. both the epidemiology of risk and constraints to behaviour are therefore a function of the partnership network. And our ability to design effective prevention strategies depends on our ability to measure and summarize that network. Using the traditional research designs, you would not see this network at all -- you would only see the unconnected nodes. They key to solving this problem lies in Network Analysis, before now a relatively obscure subfield in Sociology.For empirical studies of networks to become feasible, however, many problems had to be solved. This book documents the rapid progress that has been made. It brings together eight pioneering studies that have sought to map the networks that spread infection around the world. Each chapter reviews the questions that drove the study, the changes in methodology that were needed to implement the network survey, the mistakes and successes encountered, and the central findings that the network design made possible. An introduction provides an overview of network survey design, a glossary provides a summary of network terminology, and example questionnaires from each study provide a template for further research. This is a unique and valuable resource for the international public health research community. (shrink)

The innovative field of Regenerative Medicine (RM) is expected to extend the possibilities of prevention or early treatment in healthcare. Increasingly, clinical trials will be developed for people at risk of disease to investigate these RM interventions. These individuals at risk are characterised by their susceptibility for developing clinically manifest disease in future due to the existence of degenerative abnormalities. So far, there has been little debate about the ethical appropriateness of including such individuals at risk in clinical trials. We (...) discuss three main challenges of selecting this participant model for testing RM interventions: the challenge of achieving a proportional risk–benefit balance; complexities in the trial design in terms of follow-up and sample size; and the difficulty of obtaining informed consent due to the many uncertainties. We conclude that selecting the model is not ethically justifiable for first-in-man trials with RM interventions due to the high risks and uncertainties. However, the model can be ethically appropriate for testing the efficacy of RM interventions under the following conditions: interventions should be low risk; the degenerative abnormalities (and other risk factors) should be strongly related with disease within a short time frame; robust preclinical evidence of efficacy needs to be present; and the informed consent procedure should contain extra safeguards with regard to communication on uncertainties. (shrink)

Stakeholder management is an important method for reducing business risk. Recent decades have seen the growth of a new type of stakeholder: social protest stakeholders, individuals engaging in protest action which is directed at other unrelated parties, often the government. However, the actions of social protest stakeholders may negatively affect companies located nearby. This stakeholder category has not received any formal attention in the literature, and this article addresses the knowledge gap by exploring the effects of community-driven protest action in (...) South Africa and the strategies that firms adopt to mitigate the negative consequences of such protests. A multiple case study analysis was used to describe this type of stakeholder group and the management of the consequences of social protest action. Eight manufacturing companies in the Gauteng province participated in the study, the companies varied in size and industry. Among the key findings are that companies need to be highly adaptable if they are to mitigate the impact of protest action. We make practical suggestions about how companies may manage these risks, including the recommendation that companies engage more directly with social protestors to manage risks. The study makes an important contribution to the literature by identifying an additional key category of stakeholder and proposing a risk management approach to avert or minimize loss and damage. (shrink)

Research on human cadavers is an important mechanism of scientific progress and comprises a large industry in the United States. However, despite its importance and influence, there is little ethical or regulatory oversight of cadaver-based research. This lack of transparency raises important ethical questions. Thus, this paper serves as a call for ethicists and regulators to pay increased attention to cadaver research. I argue that cadaver research ought to be considered a subset of human subjects research and held accountable to (...) higher ethical standards. After describing current practices, I argue that oversight of cadaver research as a form of human subjects research is appropriate because cadaver research is similar to other types of human research, participants in cadaver research incur risks of harm, and a current lack of oversight has allowed the cadaver industry to entice research participation through ethically questionable practices. This paper urges greater dialogue among human subjects research ethicists and regulators about what constitutes appropriate protections for participants in cadaver research. (shrink)