Child safety is everybody's concern, but much professional activity is misinformed or based on a misrepresentation of the facts, and preventative action is rarely adequately evaluated. Written and edited by leading researchers with an active role in social policy, this new book challenges both our understanding of the problem of child safety and points to the impotence of "educational" approaches based on "knowledge enhancement". The strong message is that improving children's knowledge has little or no effect (...) on their behaviour. From the physical abuse of young children to drug abuse in adolescence, this book presents a radical new perspective on a key social issue. (shrink)

Imagine you fly home from vacation with your one-and-a-half-year-old son who is traveling for free as a “lap child.” In the airport parking lot, you put him into his forward-facing car seat, where he sits much more contentedly than he did in the rear-facing one that was mandatory until his first birthday. After he falls asleep on the way home, you transfer him to his crib without waking him, lowering the side rail so you can lift him in more (...) easily. -/- Many parts of this idyllic parenting picture are deemed unacceptably risky according to recent child safety proposals. While these proposals all aim to improve child safety, their possible impact is unclear because there has been little discussion of the absolute risk and risk reduction involved in each. And while precise figures are lacking, rough estimates indicate that the magnitudes are quite small. I will argue that this risk and benefit data raises important questions about the proposals, including whether parents might reasonably believe that the small absolute risk reduction offered by the proposed changes does not justify the attendant burdens. This possibility—termed the “prevention paradox” in other contexts—highlights ethical and theoretical challenges in this area of public health. (shrink)

During the past 20 years, states have increasingly expanded the lists of individuals who are obligated to report their suspicions of child abuse and neglect. These legal requirements are juxtaposed with ethical considerations in research and professional practice. The ethical issues include the obligation to maintain both confidentiality of information provided by human participants and the safety and protection of these participants. This article reviews the types of state child abuse reporting statutes and outlines the categories of (...) mandated reporters. I develop a model of how individual researchers should approach deciding whether they are mandated reporters of child abuse and neglect. (shrink)

In the light of requests from certain civil organisations in the Western Cape to the provincial government to establish a judicial commission of inquiry into child killings in this province because of the high incidence of killings, a research committee from three WC universities was put together to review existing research into this matter to determine a way forward. This committee looked at primary drivers of child murders in the WC, gaps in existing government services, the potential value (...) of instigating a commission of inquiry or some other mechanism, and recommending a way forward. A summary of its findings was presented to, among others, the provincial cabinet that adopted all its recommendations. Reflection on these final findings and recommendations forms the first part of the article. The second part focuses in more detail on the research data presented by experts and practitioners who informed the research committee. Important aspects discussed here are child death reviews, age- and sex-specific rates of child homicides, sexual killings of children, the possible influence of unfortunate, traumatic childhood experiences in becoming a violent adult, physical violence against children, children’s perception of their safety and risk factors for children specifically in the WC. The purpose of this article is to provide well-researched information to role-players and decision-makers regarding the lives of children to address the violence and its causes that so many children are exposed to. Although the focus is on the dire situation in the WC, the broader South African and international contexts will also be brought into play in the second part of the article in a way that will be helpful with regard to the crises and challenges the WC is struggling with in this respect. (shrink)

During the past 20 years, states have increasingly expanded the lists of individuals who are obligated to report their suspicions of child abuse and neglect. These legal requirements are juxtaposed with ethical considerations in research and professional practice. The ethical issues include the obligation to maintain both confidentiality of information provided by human participants and the safety and protection of these participants. This article reviews the types of state child abuse reporting statutes and outlines the categories of (...) mandated reporters. I develop a model of how individual researchers should approach deciding whether they are mandated reporters of child abuse and neglect. (shrink)

Nurses have an important role in preventing and responding to child abuse and neglect. This paper reports on nurses' perceptions of how organisational systems and hierarchies shaped their capacity to respond to child abuse and neglect. This is one of four key themes identified through an inductive analysis of data from a broader qualitative study that explored nurses' perceptions and experiences of keeping children safe. The study was guided by social constructionist theory, and data were collected through in‐depth (...) interviews with nurses working with children in Australia (n = 21). Key findings showed that nurses experienced many challenges to responding to child abuse, including difficulties sharing information, fear of making mistakes and inflexible systems of care. This was underpinned by an organisational ‘rule‐centred’ culture of following policies at the expense of maintaining an explicit focus on children's needs. These findings demonstrate first the importance of creative and flexible thinking from individual professionals, so policies are enacted with a clear child focus. Second, they highlight the need for leadership to enact organisational and systemic cultural change that maintains a genuinely child‐centred approach. (shrink)

Some opponents of reproductive human cloning have argued that, because of its experimental nature, any attempt to create a child by way of cloning would risk serious birth defects or genetic abnormalities and would therefore be immoral. Some versions of this argument appeal to the consent of the person to be conceived in this way. In particular, they assume that if an experimental reproductive technology has not yet been shown to be safe, then, before we use it, we are (...) morally obligated to get either the actual consent or the presumed consent of the person to be conceived. In this article, I attempt to explain the appeal of such consent-based arguments as deriving from a mistaken view of personal identity. I then argue that since this view is false, such arguments are unsound. Finally, I argue that even if reproductive cloning is unsafe, it may still be morally permissible in some circumstances. (shrink)

Parental overuse of portable technology poses a bonafide threat to the welfare and development of children. In the past decade, researchers have documented this phenomenon whereby parents pay far more attention to handheld electronic devices than to their children's safety and developmental needs. What most studies have failed to examine is the extent to which workers in privately owned and operated daycares also exhibit technology-induced distracted behavior. This article aims to identify the moral harm of caregivers' distracted behaviour in (...) a private daycare setting or, more simply, the welfare effects of distracted daycare. First, with the assistance of recent research, the phenomenon of distracted caregiving is defined. Then, the documented harms of distracted caregiving in a daycare setting are catalogued. Next, an ethical analysis of the phenomenon of distracted daycare working is undertaken from four normative ethical perspectives: (i) ethical egoism, (ii) utilitarianism, (iii) principlism and (iv) care ethics. Five recommendations for reforming distracted daycares, each based upon one or more of the four ethical perspectives, inform the article's conclusions. (shrink)

“Only about 25 percent of the employees in child-care operations around the country have had professional training in dealing with children.”—_Newsweek_ This book is a proven, practical approach to providing that training at a minimum of expense and disruption of services. Written for trainers, it may profitably be used by any individual who wants to know more about positive methods for working with children. The information provided here has been used extensively to train child-care providers throughout Illinois. Covered (...) in detail are discipline, professionalism, child and adult communication, child development, observation, assessment, play, nutrition, health and safety, parent involvement and education, child abuse, developmental care, and organization of the environment. Illinois Governor James Thompson, former DCFS Director Gregory Coler, and DCFS Director Gordon Johnson have all endorsed these materials by continuing to recommend them for day-care training in Illinois. (shrink)

Sex offender registries have given way to residency restrictions for people convicted of sex crimes in many communities in the US. Research suggests, however, that such restrictions can actually undermine the safety of the communities they are ostensibly meant to protect. Drawing on the work of Judith Butler, this essay explores why such restrictions, and strategies like them, fail and are bound to fail. Then, it considers the work of generationFIVE, an organization that seeks to eliminate child sexual (...) abuse in five generations, to explore modes of response to sexual abuse and assault that build community safety. (shrink)

Sex offender registries have given way to residency restrictions for people convicted of sex crimes in many communities in the US. Research suggests, however, that such restrictions can actually undermine the safety of the communities they are ostensibly meant to protect. Drawing on the work of Judith Butler, this essay explores why such restrictions, and strategies like them, fail and are bound to fail. Then, it considers the work of generationFIVE, an organization that seeks to eliminate child sexual (...) abuse in five generations, to explore modes of response to sexual abuse and assault that build community safety. (shrink)

People who are involuntarily childless need to use assisted reproductive technologies if they want to have a genetically related child. Yet, from an ethical point of view it is unclear to what extent assistance to satisfy this specific desire should be warranted. We first show that the subjectively felt harm due to the inability to satisfy this reproductive desire does not in itself entail the normative conclusion that it has to be met. In response, we evaluate the alternative view (...) according to which the satisfaction of this desire is regarded as a way to meet one’s presumed intermediate need for parenthood. This view presupposes that parenthood is one of those general categories of experiences and activities that contribute an irreplaceable value to people’s lives, but the central difficulty is to find those characteristics that mark out parenthood as an irreplaceable constituent of a valuable life. We go on to argue, however, that even if one assumes that parenthood is such an irreplaceable constituent that makes life more valuable, this does not necessarily entail a moral duty to satisfy the desire for genetic parenthood. We conclude that there is a pro tanto obligation to help people conceive a genetically related child (if this is what they prefer), but that this can be outweighed by other moral considerations, such as safety and justice concerns. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When a Conflict Collapses on a Child: An (Aborted) Medical Evacuation of a Hazara Toddler During the Kabul Airport Blast and the Taliban TakeoverAyesha AhmadI work in the capacity of an academic researching conflict in Afghanistan. My commitment is rooted in the firm terrain of friendships that merged into sisterhood of the Afghan terrain spaning decades of war but which is also the home of poetics and legacies (...) that refuse to be clouded by the traumas of the land.As a medical ethicist situated in global health, I perceive the inadequate focus on recognising the mental health needs born from living in war as a moral injustice and a form of silencing the suffering. This injustice should be held by the geopolitical hands that play the chords of conflict.However, such research is all too often concluded before it can develop as too dangerous, or too risky, or even as unethical because potential participants are perceived (often, unjustifiably so) to be too vulnerable.Another peril of research is the boundary drawn between a particular experience of the research objective and the life experience of the research participant. Connecting as a researcher and in a personal capacity, I fell into a chasm unseen in the context from where I work in London, United Kingdom.I remember the evening before Kabul city fell to the forced control of the Taliban. My friends reminisced during a nightfall reflection on the battles where the city walls had barricaded its inhabitants from centuries of invaders trying to access the valley of a city surrounded by mountains. Kabul city is a haven for war. Its geographic location makes it desirable to conquer, but part of its desirability is because of how the mountains envelop where the languages, ethnicities, religions, and stories of the Silk Road have settled and rested. Once conquered, the city protects you. And Kabulis felt safe. And to that end, on that fateful night, we ended our conversation in the confidence of hope; that Kabul city would not fall, and with the heart of the country still intact, Afghanistan would be saved.The dawn arrived and so did the approach of the Taliban to the city gates. There were frantic and rapid whispers that transformed into screams. And then the moment came, the Taliban were within the city walls.The juxtaposition between the regular London traffic heaving and breathing, and the frantic, panicked sounds of horns and vehicles fleeing in Kabul that I heard through WhatsApp audios in the background to friends narrating their journey home, was as stark as the peace and war they both echoed. [End Page 167]Soon the stories started speaking, pleading, paining, pressuring—stories seeking survival. In the dawn, instead of the sun breaking the sky, I broke the morning to a friend during a telephone conversation who had just awoken and had not yet received the news. I told my friend that the Taliban were in Kabul city. The reaction was grief, just like the grief I had heard in their voice a few months prior when their beloved father had passed away and entered the grave before they had breathed the new dawn. In the dusk, instead of the moon shining upon the city, women, families, and children were sheltering from the darkness of the grave closing amid their breathing bodies.Then, the blast came. In the energy of the quest for safety, people, walking like pilgrims, surrounded Kabul airport, queuing like worshippers. Prayers died. Hell rose. The waiting crowd was fired upon. The air did not offer breath; instead, a final moment of the sound of war that had blighted lives.In the crowd was a family who I dedicate this article to. I write the story of the father, the mother, the daughter, and the son of that day. The family was Hazara, a disputed and discriminated ethnic minority in Afghanistan, of a legacy traced to the invasion of Genghis Khan, the founder of the Mongol Empire. Theirs is a story of travellers and a soil of stories; a particularly profound story because the parents had specialised in geology and were experts of the stones of their long heritage. Yet, still, they... (shrink)

Farm to School programs aim to connect school children with local foods, to promote a synergistic relationship between local farmers, child nutrition and education goals, and community development. Drawing from 18 months of ethnographic research with a regional FTS project and interviews with child nutrition program operators implementing FTS across Georgia, we identify perceptions of food safety as an emerging barrier in efforts to bring local foods into schools. Conducting a thematic analysis of data related to food (...) safety, we find that FTS participation may be hindered by discourses and perceptions of safety risks attributed to local foods—and to local produce in particular. We argue that this results, paradoxically, from a core tenant of FTS and other local food movements: forging personal relationships with farmers, through which POs confront the transparency of local food production, in contrast to the opacity of food procured through standard supply chains. Faced with unfamiliar production practices, and responsibilized to protect students as “at risk” subjects, POs may decide that buying local food is “not worth the risk.”. (shrink)

Farm to School programs aim to connect school children with local foods, to promote a synergistic relationship between local farmers, child nutrition and education goals, and community development. Drawing from 18 months of ethnographic research with a regional FTS project and interviews with child nutrition program operators implementing FTS across Georgia, we identify perceptions of food safety as an emerging barrier in efforts to bring local foods into schools. Conducting a thematic analysis of data related to food (...) safety, we find that FTS participation may be hindered by discourses and perceptions of safety risks attributed to local foods—and to local produce in particular. We argue that this results, paradoxically, from a core tenant of FTS and other local food movements: forging personal relationships with farmers, through which POs confront the transparency of local food production, in contrast to the opacity of food procured through standard supply chains. Faced with unfamiliar production practices, and responsibilized to protect students as “at risk” subjects, POs may decide that buying local food is “not worth the risk.”. (shrink)

Background Caring is a core function of nurses and it confers upon them ethical obligations as ethical agents. Failure to carry out such ethical obligations raises ethical concerns. This study was not intended to explore ethical concerns, but the reported findings reveal problems which have ethical implications. This paper aims to elucidate the ethical issues inherent in the findings and propose strategies to mitigate them. Research design and methods An exploratory-descriptive qualitative design was used within a larger Action Research Study. (...) Data were collected through focus group discussions with nurse/midwives, and through exit interviews which were conducted with the women who participated in the study on their day of discharge. Six focus group discussions and thirty exit interviews were conducted, and data were analysed through thematic analysis. Participants and research context The study took place at selected maternal and child healthcare settings in Lilongwe, Malawi. The participants were nurse/midwives and women who were admitted in maternal and child healthcare settings and were purposively sampled. Ethical considerations Ethical approval was obtained from the relevant ethics committee and all ethical guidelines were followed in the conduct of the study. Findings The findings are presented under three themes which emerged from the data. The findings reveal effects of staff shortages on patient outcomes, problems experienced in low resource clinical settings and disrespectful nurse/patient communication. Conclusion The findings reveal that institutional factors constrain moral agency and patient safety is severely compromised in some of the clinical settings in Malawi which raises serious ethical concerns. (shrink)

This qualitative study analysed the agency of eight non-abusing mothers in the Turkish Cypriot Community after disclosure that their child had been sexually abused by someone outside the family. The aim was to discover how, after disclosure, such mothers act to protect their children in the contexts of their family and community. The data were gathered via semi-structured in-depth interviews and analysed using Interpretative Phenomenological Analysis. In the nuclear family context, maternal agency emerged in the form of motherhood skills, (...) including emotionally supporting the abused child, double-checking the child’s safety or limiting the child’s mobility, and controlling the actions of adult sons. In the community context, maternal agency was manifested in efforts to prevent men in the extended family or the abuser’s family from concealing the abuse and to obtain informal support from others such as birth or extended family members. The women were usually successful in hiding their reactions or making decisions in their children’s best interest despite frequently having to cope with the reality of living in a restrictive and patriarchal culture. The results emphasise the need for working with the general public and professionals to change the culture of silence and to improve the social support network for sexually abused children and non-abusing family members, especially mothers. (shrink)

This study aims to draw a gender based analysis of social and economic conditions of child labourers living in Karachi. Globally the issue of child labour is growing constantly and children are engaged in all sorts of hazardous forms of work, like adults, which deprives them from education, healthy life, child hood activities and balanced diet. In Pakistan the child labour is very common in all economic sectors, but it is mainly found in the informal sector (...) and the household sector. Purposive and convenience sampling techniques of non-probability sampling are used to collect data through structured questionnaire from 900 respondents from eighteen administrative districts of Karachi, which is based upon primarily quantitative and narrowly focused qualitative research methods. The findings of the study reveal that mostly children between the ages of 12 to 14 years are commonly inducted in different economic sectors. This clear violation of child rights makes them vulnerable to health and safety threats and putting them forcefully in hazardous occupations to earn bread and butter for their family by compromising their education. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Family, Friends, and Cancer:The Overwhelming Effects of Brain Cancer on a Child’s LifeLynne ScheumannOur son was diagnosed with a medulloblastoma at the old age of 13. The “lucky” part for him was his brain was almost fully developed at this age as opposed to most “medullo” patients. While this was a benefit to him it was also one of the hardest things for him.He went into surgery a (...) highly intelligent, active, and left handed boy and came out unable to move his left side, could barely speak, and very much aware of what he just lost. We, as a family, were totally unprepared for how globally this would [End Page 23] affect the rest of his life. As we spent time in the hospital I would look at the children with other types of cancer and see them walking and talking and doing their schoolwork and God forgive me I would be jealous. The fact that the cancer was in his brain, the part of his body that makes him who he is changed everything forever.He lost all of his friends because 13–year–old boys communicate best through physical activity and that was not an option for him. He still has the same personality and sense of humor, but he will not be the architect or engineer he once dreamed of being. Math, that was once so easy for him was now like a foreign language, never to be mastered again. He was able to graduate from High School and takes classes at our local Junior College in Computer Assisted Drafting, but he can only manage one or two classes a semester due to the fatigue he still suffers from.What I most worry about and wish I had been forewarned about is his long–term quality of life. Physically he has come such a long way from how he was after the resection. It was a very slow process in which the first year of rehab was slowed by the fact that one of the chemo agents causes peripheral neuropathy. He developed contractures in his ankles and needed serial casting and ankle–foot orthotics (AFO) not just on the left leg, but now the right. He was able to switch his handedness fairly easily and his left hand will always be of limited usefulness because of ataxia. I would get angry at him that he gave up on his left side so quickly until it was finally explained to me years later that the ataxia would never get better.As far as his walking ability goes he has come a long way. At first he was unable to walk and once he started rehab he went back to learning to crawl and progressed to a walker. The first time I saw him walk with the walker brought tears to my eyes. It was so much more of an event for me than when he took his first steps as a toddler. This was so much more hard fought. He never complained, just always did what was asked of him. It had to have been such hard work and also somewhat embarrassing, as he needed help to literally do everything for months. He progressed to a cane and about two years ago decided not to use that or his AFO’s. He now wears high top boots that substitute for the AFO’s but don’t make him appear disabled. Recently he decided there are times when he would be safer if he had his cane and purchased one that looks more like a hiking stick than a cane. I think he has come to terms with the fact that physically he is as good as he is going to get and works hard to maintain what he did regain. He has a trainer and goes to the gym on a regular basis with no prompting from us. I do not know if he realizes that as he ages things will be harder for him than the average person. I think in some way he is aware of that because he did decided to use the cane if safety is an issue.His... (shrink)

Until a few years ago, the prevailing view was that children should not be participants in clinical research trials because children were incapable of consenting to such nontherapeutic interventions and are particularly vulnerable to abuse. That view has undergone a significant shift in the last few years, particularly in the context of trials to test the safety and effectiveness of drugs. A number of events facilitated this change, including the widespread off-label distribution of drugs to children and developments in (...) the AIDS epidemic. These social forces have shifted the core ethical question from whether children should be research subjects to when children should be research subjects.The presumption in favor of including children as research subjects for drug trials has manifested itself primarily through two different reforms: a 1997 federal statute and a set of regulations promulgated by the Food and Drug Administration that recently became effective. Together they reflect the view that children deserve the same access to safe and effective therapies as adults. (shrink)

The purpose of this paper is to analyse the Spanish mobile phone industry to determine how mobile phone companies and certain institutions can improve protection for children who use mobile phones. We carried out a multivariate statistical analysis using anonymous primary data from mobile phone companies, and institutions and associations that protect children, to compare these stakeholders’ opinions and to put forward solutions. We proved that, even though some European countries have made an effort to provide safer ICT services, all (...) stakeholders still need to cooperate and agree on solutions to the commercial problems associated with children using mobile phones. This can be done by signing codes of conduct. We found that even though some companies implement measures to protect children from accessing harmful content via their mobile phones, they do so for reasons of legal and not social responsibility. (shrink)

Protecting children from abuse has never been more central to our welfare system than it is now. Schools, and the people who work there, are vital to the government's vision for child protection. New laws, guidance and standards all set out what educational establishments must provide in order to meet their legal obligations. This book brings all these sources together to provide detailed and practical advice to help the busy teacher or school manager. Based on years of direct experience (...) in advising schools, the author offers a realistic and informed account of the inter-agency system and of the particular contribution of schools within it, including: information on the legal and procedural frameworks responding to concerns about children's welfare meeting inspection standards for effective governance promoting inter-agency communication managing allegations against education staff wider issues of child safety, including bullying and child employment. _Protecting Children_ provides a guide through the minefield, balancing the needs of parents, professionals and pupils. It will be essential reading for all designated and newly-qualified teachers, school managers, governors and LEA officers. (shrink)

Inequitable access to health care, social inequities, and racist and discriminatory care has resulted in the trend toward poorer health outcomes for Indigenous infants and their families when compared to non‐Indigenous families in Canada. How Indigenous mothers experience care during an admission of their infant to the Neonatal Intensive Care Unit has implications for future health‐seeking behaviors which may influence infant health outcomes. Nurses are well positioned to promote positive health care interactions and improve health outcomes by effectively meeting the (...) needs of Indigenous families. This qualitative study was guided by interpretive description and the Two‐Eyed Seeing framework and aimed to understand how Indigenous mothers experience accessing and using the health care system for their infants. Data were collected by way of interviews and a discussion group with self‐identifying Indigenous mothers of infants less than two years of age living in Hamilton, Ontario, Canada. Data underwent thematic analysis, identifying nursing strategies to support positive health care interactions and promote the health and wellness of Indigenous infants and their families. Building relationships, providing holistic care, and taking a trauma‐informed approach to the involvement of child protection services are three key strategies that nurses can use to positively impact health care experiences for Indigenous families. (shrink)

Nurses and doctors who deal with human lives have started questioning their own decisions and practices particularly when there is an ethical dilemma. To survive competently within the profession and to make ethical decisions for the client’s safety, one needs to be equipped with knowledge pertaining to Bio-Ethics. This paper brings attention to a real life dilemma of a sixteen year old female child who had been sexually abused by one of her family friends. She insisted the school (...) health nurse to keep the information confidential, particularly from her parents. Consequently, the nurse had to confront a real dilemma regarding the disclosure of information to the parents of the victim. If the nurse respected the client’s autonomy to take her own decisions, then probably she may have put the client’s life at stake as she would not get any support, guidance and protection from further abuse. This paper will examine the role of health nurse or professionals in school setting for client safety. Moreover, this paper will also integrate moral reasoning by using the ethical decision making model by Patricia Chricham from Bioethics discipline. (shrink)

Background A baby hatch called the “Stork’s Cradle” has been in place at Jikei Hospital in Kumamoto City, Japan, since May 10, 2007. Babyklappes were first established in Germany in 2000, and there are currently more than 90 locations. Attitudes regarding baby hatches are divided in Japan and neither opinions for nor against baby hatches have thus far been overwhelming. To consider the appropriateness of baby hatches, we present and examine the validity of each major objection to establishing baby hatches. (...) Discussion There are various objections to baby hatches as follows: It violates a child’s right to know the identity of his or her biological parents by allowing anonymous birth; it neglects fulfillment of the biological parents’ basic obligation to raise their child and its very availability induces abandonment of infants; some people abuse it for very selfish reasons; it cannot save babies’ lives; the rights of one parent can be ignored if the other surrenders a child without his or her consent; it puts a baby in medical jeopardy; and it has no clear legal basis. The authors would argue that there are many plausible refutations for each objection mainly based on priority of child’s right to life, pregnant women’s vulnerability and necessity of anonymity, social responsibility to protect and raise children, differences between dropping a child off at a baby hatch and child neglect, limited function of social childcare center, inevitability of abuse by a minority of people, necessary distinction between outcomes that occur only because baby hatches exist and those that occur regardless of their existence, important local direct and upmost measures for women in trouble, and difference between ambiguous legality and illegality. Summary We argue that a certain number of baby hatches should continue to be established as a last resort, in a form that can maintain anonymity if the parent dropping the child off so desires. It should be supported if it is initiated with good intentions; if the maximum possible effort is made at said facility to protect the interests, rights, and safety of the child; and if no clear evidence of harm exists. (shrink)

Parents play a critical role in their child’s personal development and day-to-day experiences. However, as digital technologies are increasingly embedded in most New Zealand children’s everyday life activities parents face the task of ensuring their child’s online safety. To do so, they need to understand the way their child engages with and through these tools and make sense of the rapidly changing, and more technically complex, nature of digital devices. This presents a digital parenting dilemma: maximising (...) children’s online opportunities while minimising online risks and potential harm. This factsheet presents evidence about digital parenting in New Zealand based on nationally representative data collected from parents, caregivers and whānau and their children aged 9-17. It uses measures from the Global Kids Online project to explore the prevalence of different practices used by New Zealand parents to influence or mediate children’s internet use. (shrink)

In February 2016, the Institute of Medicine released a report, commissioned by the United States Food and Drug Administration, on the ethical and social‐policy implications of so‐called three‐parent in vitro fertilization. The IOM endorses commencement of clinical trials on three‐parent IVF, subject to some initial limitations. Also called mitochondrial replacement or transfer, three‐parent IVF is an intervention comprising two distinct procedures in which the genetic materials of three people—the DNA of the father and mother and the mitochondrial DNA of an (...) egg donor—can be used to create a child. Three‐parent IVF would enable a woman with mitochondrial disease to have a genetically related child without transmitting the disease to the child. The possibility for three‐parent children has prompted criticism from many corners. Critics have pointed to ethical issues including safety concerns and risks to children, genetic and germline engineering concerns, the potential exploitation of the third‐parent egg donor, donor anonymity and privacy, and objections to creating babies with three parents, which undermines natural and traditional conceptions of procreation. Additionally, developing the technology would involve experimenting on, manipulating, and disposing of embryos. Although the IOM report considers the ethical concerns about the value of the three‐parent IVF technology, the IOM failed to give due attention to an important objection to the development of this technology: three‐parent IVF lacks the social value necessary to make investment of public resources in it ethical.Unlike the other concerns, this objection is not based on conservativism about new reproductive technologies or default favoritism of the status quo. I argue that the technology does not meet a plausible social value standard to render public research investment into its development ethical. Proponents of three‐parent IVF make inaccurate and exaggerated claims that it will eradicate mitochondrial disease and save lives. Were these claims true, proponents would have a strong case for the social value of the technology. But three‐parent IVF alone will not eradicate mitochondrial disease, and it will not save lives. Rather, it can create healthy lives. As I discuss, the moral distinction is crucial. Most importantly, investment in three‐parent IVF comes at the opportunity cost of researching treatment for mitochondrial disease that would benefit actual, living disease sufferers. (shrink)

Developing a simple test to identify swiftly neonates with sepsis who carry the genetic variant which means that one dose of the recommended antibiotic, gentamicin, will cause the child to become profoundly deaf looks like an admirable objective. The baby needs antibiotics and needs them within 1 hour of admission to the neonatal intensive care unit. Conventional genetic tests take much longer to yield results. The test being trialled produces results in 25 min; a baby who carries the variant (...) can be treated with a different antibiotic. All the test requires is a gentle swab of the baby’s inner cheek. Babies can be treated for potentially fatal sepsis without the risk that the drugs designed to save their lives will cost them their hearing. Parents and healthcare staff are relieved of worry—a great idea? PALOH is not a trial of the safety or efficacy of the test, only to assess how feasible it will be to carry out this test in a busy NICU, without disrupting the care of the baby. A tiny painless ‘scrape’ will take a sample of DNA—what’s the fuss about? Several other invasive and painful procedures will be carried out without a fuss.1 The problem is DNA. Genetic information must be safeguarded from falling into the wrong hands. In section 45 of Human Tissue Act 2004, Parliament legislated to prohibit non-consensual DNA testing.1 It fits uncomfortably in a statute designed to regulate retention and uses of human material, after revelations that organs and tissue from the …. (shrink)

The article by Conrad et al. (AJOB Neuroscience, 2019, 10:1) does not take into account another, still hypothetical, procedure for cognitive enhancement (CE) which would be appropriate to consider in the surveys, i.e. the possibility to genetically enhance the cognitive abilities of a future individual using genome editing techniques. In this case, the conclusions of the article in the context of the “self-others difference” and “safety/naturalness” would be questioned. In fact, the results of the hypothetical surveys with the variant (...) “genome editing” could be significantly different from those obtained in the survey proposed by the authors: an individual would decide not for himself, but for the CE in a future child. In light of these considerations, we hold that the article highlights just the attitudes toward the principle of autonomy and redistributive justice; however, by introducing the new hypothetical scenario of CE with genome editing the attitudes toward the principles of beneficence and non-instrumentalisation could also be appreciated. Special attention to future generations is necessary to inform potential CE public policy, though using genome editing to enhance cognition abilities is just a future hypothetical perspective. (shrink)

This paper explores the ethics of introducing genome-editing technologies as a new reproductive option. In particular, it focuses on whether genome editing can be considered a morally valuable alternative to preimplantation genetic diagnosis (PGD). Two arguments against the use of genome editing in reproduction are analysed, namely safety concerns and germline modification. These arguments are then contrasted with arguments in favour of genome editing, in particular with the argument of the child’s welfare and the argument of parental reproductive (...) autonomy. In addition to these two arguments, genome editing could be considered as a worthy alternative to PGD as it may not be subjected to some of the moral critiques moved against this technology. Even if these arguments offer sound reasons in favour of introducing genome editing as a new reproductive option, I conclude that these benefits should be balanced against other considerations. More specifically, I maintain that concerns regarding the equality of access to assisted reproduction and the allocation of scarce resources should be addressed prior to the adoption of genome editing as a new reproductive option. (shrink)

This paper traces the changing status of the school as a counter culture in the anthropological and historical literature, in particular from the moment when compulsory mass schooling assumed the function of ideological state apparatus in the post-revolutionary 19th century West. It then focuses attention on what may be called the New School, which could be said to represent an evolved, postmodern embodiment of the social archetype of the school as interruption of the status quo. It emerged in the form (...) of schools initially associated with Romanticism and with socialist libertarian or ‘anarchist’ impulses, and moved, if temporarily, into the educational mainstream in the late 19th and early 20th centuries in the left sector of the Progressive Education movement, proliferated in the 1960s and 70s in various school reform movements, and is a constant presence today in the theory and practice of those schools that identify themselves as ‘democratic’. It is based on principles of adult–child dialogue and direct democratic practice. Examples that we have of the New School tend to be characterised by material and activity environments that value variety, emergence, choice, emotional safety, self-initiation and self-organisation; that are multi-sensorial and polysymbolic; and that are organised on the principles associated with mastery learning, social learning theory and play theory—that is, moderate complexity and optimal cognitive arousal as exemplary conditions for learning. (shrink)

Despite the growing global consensus regarding the need to ensure minimal labour standards such as adequate safety and health conditions, freedom of association, and the prohibition of child labour, millions of workers across the world continue to work in horrific conditions. Who should be held responsible, both morally and legally, for protecting workers' rights? What moral and legal obligations should individuals and institutions bear toward foreign workers in their countries? Is there any democratic way to generate, regulate, and (...) enforce labour standards in a global labour market? This book address these questions by taking a fresh look at the normative assumptions underlying existing and proposed international labour regulations. By focusing on international labour as a particular sphere of justice, it seeks to advance both the contemporary philosophical debate on global justice and the legal scholarship on international labour. (shrink)

Within the context of global debates about safety and ethics of supporting women to give birth at home, it is important to analyse documents governing midwifery and obstetric practice and influence decision‐making around place of birth. In Australia, the United States and the United Kingdom, relatively small numbers of women choose to give birth at home despite their midwifery colleges' support. In the United States and Australia, the obstetric colleges do not support homebirth and these countries have lower numbers (...) of women who birth at home, compared with the United Kingdom. There are numerous regulatory and industry challenges for midwives attending homebirths. This paper reports on a Foucauldian analysis of Australian obstetric and midwifery colleges' position statements about homebirth, who have conflicting views, with the view to understanding their arguments and underlying assumptions. The documents highlighted tensions between competing discourses of risk and autonomy and differences in academic argument. Opportunities for strengthening their statements are highlighted. The methodology is applicable for future analysis of similar documents governing practice in other countries. (shrink)

Suppose we agree to reject the view that privacy has narrow scope and consequently is irrelevant to the constitutional privacy cases. We then have (at least) these two options: (1) We might further emphasize and draw out similarities between tort and constitutional privacy claims in order to develop a notion of privacy fundamental to informational and Fourth Amendment privacy concerns as well as the constitutional cases. We can cite examples indicating this is a promising position. Consider consenting homosexuality conducted in (...) one's home, for instance. We view it as a private matter, whether the state is seeking to regulate the behavior, or if others are attempting to gain or exploit information about it. I believe basic conceptual similarities between tort and constitutional interests can be identified by showing that there is a range of similar reasons for protecting both tort and constitutional privacy concerns. We might worry, however, that a comprehensive concept of privacy may be too general to be very useful, given that privacy violations can be so diverse, and can arise, for example, from misuse of confidential information, from conduct that is intrusive even if no information is gained or disclosed, from disturbance of an intimate relationship, or from disruption of various other important aspects of one's life.(2) We could concede that whatever “privacy” means in the tort and Fourth Amendment cases, it means something different in the constitutional cases. Nevertheless, we might take that “something else” seriously as a distinct but legitimate use of the term which is not “spurious” but is reflected in our ordinary language. This appears to me to be a fruitful alternative. After all, contrary to Henkin's view that tort privacy is “what most people mean by privacy,” the term is often used in contexts beyond informational privacy and clearly related to the interests at stake in the constitutional cases. Thus, for example, in a pamphlet explaining how to protect children by teaching them how to say “No!” to strangers without making them paranoid or antisocial, parents and teachers are told, Children have a right to privacy. Teach it. Reinforce it. One of the ways to help children prevent sexual assault is to encourage them to develop a sense of physical integrity. A sense that they have a right to their own body space and privacy. Just as we allow them to close the door when they use the bathroom, we must allow them to say no to any unwanted physical affection and touch. Flora Calao and Tamar Hosansky, “The Key to Having Fun is Being Safe: Teaching Personal Safety to Children,” The Safety and Fitness Exchange, 1123 Broadway, N.Y., N.Y. 10010. Unfortunately, the most obvious starting point for identifying the sense of private relevant to the constitutional cases is extremely worrisome. The Court itself has said ... only personal rights that can be deemed “fundamental”...are included in this guarantee of personal privacy...the right has some extension to activities relating to marriage...procreation...contraception...family relationships... and child rearing and education.Roe v. Wade, 410 U.S. 113 (1973).The difficulty, of course, is that little more is offered by way of explanation of which rights are “personal” or “fundamental” or both. Focusing on marriage makes Roe v. Wade difficult to understand given that Ms. Roe was unmarried, and attending only to family issues does not help us make sense of the Stanley case protecting one's right to view pornography in one's home. It is perhaps more problematic that decisions such as what color shoes to wear are reasonably viewed as personal, yet are far from fundamental enough to warrant protection. And regulations governing the draft and employment, for example, are not viewed as privacy invasions although they might be said to interfere with matters of one's life that are both fundamental and personal in the vague sense described.Before we give up in frustration, however, I would urge that we recall that even in tort law the notion of privacy has been evolving through a constellation of judgments. Although there is no fixed way of using the term which we then proceed to analyze, the concept of privacy has not in those cases been taken to be meaningless or empty. Similarly, there is reason to believe that the scope of a “personal and fundamental” notion of privacy relevant to the constitutional cases can be further delineated through a consideration of cases, especially since it seems to me that in many cases application of the term is clear and unproblematic. A decision to have a vasectomy, for example, can uncontroversially be said to be a personal and fundamental one, and it is in that sense private. We fail to acknowledge the personal significance in an individual's life of forcing or refusing him the operation if we deny that this important sense of privacy is relevant to such a decision merely because an interest in determining for oneself what one ought to do is also at risk.Of course, once it is settled that something is a private matter, it is a separate issue to decide whether or not, in some social context, an invasion of it can be justified. Thus, I would claim, a mandatory sterilization program for male recidivists or for those in a country suffering grave poverty and overpopulation does invade privacy, and the social or legal question is whether or not the invasion can, in the particular circumstances, be justified. Although all will agree that both individual and social interests must be balanced by moral philosophers as well as the courts, in conflicts we will not always agree on the weight to be accorded individual claims.I have not provided a constitutional defense for citing privacy as one right at stake in the constitutional privacy cases. Nor have I attempted to enter the debate about how strictly to interpret the Constitution. But if I am correct, then we can agree there is an important interest in privacy at issue in those cases without merely conflating privacy and autonomy or liberty, and can continue the process of marking out its boundaries. If we reach such agreement, we will have made considerable progress. Moreover, the implications of this view are significant. Current constitutional standards, controversial though they may be, require “strict scrutiny” for cases concerning “fundamental values,” and privacy has been judged to be one such value. Thus these privacy claims have a greater chance of being protected when they conflict with other rights or general interests than they would have if only liberty, or freedom from governmental interference, were involved. (shrink)

Information communication technology is spreading fast and wide. Driven by convenience, it enables people to undertake personal tasks and make decisions more easily and efficiently. Convenience enjoys an air of liberation as well as self-expression affecting all areas of life. The industry for children's toys is a major economic market becoming ever more tech-related and drawn into the battle for convenience. Like any other tech-related industry, this battle is about industry dominance and, currently, that involves networked toys. Networked toys aim (...) to enhance convenience for children and parents alike. Increasingly difficult to resist, these convenient networked devices are also a societal game changer. Neatly nestled in a lacuna juris and surrounded by a lack of clinical evidence, networked toys raise complex ethical issues concerning human development. This article lays bare the regulatory nexus for networked toys and invites ethical thinking to fill the gap to ensure sufficient protection for all human developmental stages. Networked toys not only affect but also might interfere with child development. Therefore, the article initially summarises the four key psychological stages through which the neurological development of the human brain processes. Each of these stages involves vital windows for human development in cognitive, emotional and social dimensions. Missing any of these developmental windows changes an individual human for life. The article then takes a look at the two main legal frameworks protecting the stages of human development which are applicable to networked toys: First, the examination of the human rights framework with its major segments emanating from the fundamental rights to privacy for family and home, to a child's education as well as to personal data reveals the use of current networked toys as a shielded part of parenting which tends to be at odds with privacy and data protection requirements. Second, the product liability framework for toy manufacturers requires evidence-based causality for putting a child's safety at risk. Unfortunately, these legal frameworks fail to offer sufficient protection of the human developmental stages. There is a lacuna juris. Although networked toys involve the risk of negatively impacting human development in every dimension, clinical psychological studies are impossible to acquire as court evidence for product liability because they take too long to provide reliable data while exposing several generations of children to the examined risk in the process. Meanwhile the temptation of convenience continues to drive the industry and consumers of networked toys and devices, which are already impacting children of all age groups. Accepting this phenomenon as an element of cognitive dissonance in society and in science falls far short of an appropriate ethical balance. The need for creating such an ethical balance concerning networked toys is all the more imperative because even if the networked toy industry managed to eliminate all psychological risks for human development and every legal conflict with privacy and security, significant ethical and societal risks of networked toys remain due to inevitable technological bias. Against these mounting changes, it is suggested that only an ethical approach of interdisciplinary research and learning seems most promising to develop an appropriate equilibrium between the complex challenges posed by networked toys and the societal values at stake. (shrink)

Writing deliberately in a nontechnical style so as to make his book accessible to readers who are not professional philosophers, Michael Gelven here offers an extended meditative essay on the nature and meaning of truth. He approaches this subject directly, rather than through a critique of what others have said about it, and takes off from the realization that truth has a wider meaning than that which can be found in the analysis of true sentences, which is the focus of (...) traditional epistemology. Pursuing philosophical inquiry as a voyage of discovery, the book begins with ordinary questions about the worth and meaning of truth. A fundamental distinction is drawn between the "true" and "truth" as essence, that which we confront as the ultimate terminus of our questioning—for example, between the true definition of mother as a female parent and truth as what we understand being a mother to mean, as one who sacrifices her own interests and safety for her child. The analysis then proceeds to examine the four ways in which we confront truth—through affirmation, acceptance, acknowledgment, and submission—and the existential modes of experience in which these confrontations are embodied: pleasure, fate, guilt, and beauty. Each of these four confrontations has consequences for how we understand the world in which we dwell. Thus the book concludes with interpretation of the world as our home, our history, our tribunal, and ultimately that which lures or beckons us to confront ourselves. Plato, Kant, and Heidegger are the primary sources of philosophical inspiration for Gelven, but he eschews textual exegesis and academic debate in favor of engaging the reader as co-explorer in the discovery of what it means for each of us to be in truth. (shrink)

Writing deliberately in a nontechnical style so as to make his book accessible to readers who are not professional philosophers, Michael Gelven here offers an extended meditative essay on the nature and meaning of truth. He approaches this subject directly, rather than through a critique of what others have said about it, and takes off from the realization that truth has a wider meaning than that which can be found in the analysis of true sentences, which is the focus of (...) traditional epistemology. Pursuing philosophical inquiry as a voyage of discovery, the book begins with ordinary questions about the worth and meaning of truth. A fundamental distinction is drawn between the "true" and "truth" as essence, that which we confront as the ultimate terminus of our questioning—for example, between the true definition of mother as a female parent and truth as what we understand being a mother to mean, as one who sacrifices her own interests and safety for her child. The analysis then proceeds to examine the four ways in which we confront truth—through affirmation, acceptance, acknowledgment, and submission—and the existential modes of experience in which these confrontations are embodied: pleasure, fate, guilt, and beauty. Each of these four confrontations has consequences for how we understand the world in which we dwell. Thus the book concludes with interpretation of the world as our home, our history, our tribunal, and ultimately that which lures or beckons us to confront ourselves. Plato, Kant, and Heidegger are the primary sources of philosophical inspiration for Gelven, but he eschews textual exegesis and academic debate in favor of engaging the reader as co-explorer in the discovery of what it means for each of us to be in truth. (shrink)

Nearly 400 million adults have been vaccinated against COVID-19. Children have been excluded from the vaccination programmes owing to their lower vulnerability to COVID-19 and to the special protections that apply to children’s exposure to new biological products. WHO guidelines and national laws focus on medical safety in the process of vaccine approval, and on national security in the process of emergency authorisation. Because children suffer much from social distancing, it is argued that the harms from containment measures should (...) be factored in a broader perspective on the good of the child. Considering the available knowledge on the disease, vaccine, and coping strategies, the decision about vaccine access to children is a public responsibility. The ultimate choice is a matter of paediatric informed consent. Moreover, jurisdictions that permit non-participation in established childhood vaccination programmes should also permit choice of vaccines outside of the approved programmes. Even if vaccine supply is too short to cover the paediatric population, the a priori exclusion of children is unjust. It may also exacerbate local and global inequalities. The second part of the paper delineates a prudent and ethical scheme for gradual incorporation of minors in vaccination programmes that includes a rigorous postvaccination monitoring. This is a theoretical paper in ethics that uses the Pfizer vaccine as a stock example, without discussing possible differences among existing vaccines. The key purpose is reflection on the good of the child in emergencies and vaccine policymaking. All data relevant to the study are included in the article and in its refernces. (shrink)

This article is a reflection on the significance of the recent struggle in Brisbane to prevent a two-year-old refugee child, Asha, from being taken from hospital and deported. The child was suffering from burns and after her treatment the doctors refused to sign a release form as her safety could not be guaranteed in the refugee camp. The stance of the doctors produced widespread support from the people of Brisbane and the rest of Australia forcing the government (...) to temporarily back down and allow the child and her parents to be placed in community detention in Australia rather than off-shore. (shrink)

Textile is one of the largest export and source of foreign exchange in Pakistan. For the last two decades, Textile sector is serving as the backbone for Pakistan economy. Several foreign retailers including Target, Jessie Penny, Wal-Mart, and Kohl’s are outsourcing textile and garments from Pakistan. Along with the quality, these retailers are highly concerned with the ethical and social issues of their suppliers, including child labor, forced labor, compensation, working hours and environment health, and safety. My current (...) study is an applied research, based on the problem, regarding the working hours and its proper management in textile factories, mismanagement of which lead to serious issues during social and ethical standard audits. Repetition of which may consequent in termination of business with suppliers and factories. The research hypothesis is that working off the clock will lead to overtime premium not paid and double book record keeping. As far as ethical and social compliance is concerned both overtime premiums not paid and double book records are critical issues during SC audit. A sample of 40 suppliers of Pakistan was randomly selected working with foreign buyers. Secondary data were used to verify the findings based on Audits finding conducted by different third party during a period of 2 years, i.e. Feb., 2010 to Jan., 2012. The results and research findings reflect that during the last 2 years out of 40 factories audit reports 25 factories were found having working off the clock that also lead to overtime premium not paid. However, double book records were not witnessed in all 40 factories SC audit reports as parallel records were not maintained by any factories. The above findings will help the suppliers, factories, and buyers to develop a proactive approach and proper production planning to avoid critical issues and smooth business activities. (shrink)

Research to improve the health of pregnant and fetal patients presents ethical challenges to clinical investigators, institutional review boards, funding agencies, and data safety and monitoring boards. The Common Rule sets out requirements that such research must satisfy but no ethical framework to guide their application. We provide such an ethical framework, based on the ethical concept of the fetus as a patient. We offer criteria for innovation and for Phase I and II and then for Phase III clinical (...) trials to improve the health of pregnant patients and of fetal patients and also criteria to responsibly manage the transition from investigation to clinical practice. Basing ethical criteria for research involving pregnant women on the ethical concept of the fetus as a patient insulates the proposed ethical framework and therefore research on pregnant women from the divisive and politicized concepts and discourses of personhood, fetal rights, and unborn child. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Living Organ Donors’ Stories: (Unmet) Expectations about Informed Consent, Outcomes, and CareElisa J. Gordon, Symposium EditorKeywordsEthics, informed consent, kidney, liver, living donor, narrative, transplantationLiving donor organ transplantation has become standard treatment for patients with end-stage kidney or end-stage liver disease. Live donors comprised approximately 5,769 (34%) and 247 (4%) of all kidney and liver transplants in 2011, respectively (OPTN/UNOS). The reasons why people donate, the perception that donating does (...) not entail a decision per se, and the attendant fears and anxieties living donors feel about donating, have all been previously well investigated (Lennerling, Forsberg, Meyer, & Nyberg, 2004; Papachristou, Walter, Frommer, & Klapp, 2010). But much less is known about how donors experienced the overall donation process including the donor evaluation, preparation, appreciation of risks, decision-making, informed consent, post-operative, recovery processes, and the impact of donating on all aspects of their life, from their point of view. Thus, a narrative approach is essential for gaining insights into these less well known phenomena.There is good reason to remain concerned about the safety and ethical basis of living donation considering that living donors undergo serious health risks for no direct medical benefit to themselves (Ethics Committee of the Transplantation Society, 2004; Laird, 2012; Neergaard, 2011; Ratner & Sandoval, 2010; Shelton, 2011). The situation raises serious ethical questions specifically about nonmaleficence and informed consent, and more broadly about using people as a means to an end. The absence of long-term information may not undermine a willing donor’s commitment to save a loved one’s life, but is certainly cause for concern among transplant clinicians who want to be sure to disclose information that may be material for donors in order to provide adequate informed consent. In other words, the disjuncture between what transplant clinicians find important to disclose to donors and what prospective donors need to know—which follows along the lines of what Elliot Mishler referred to as the ‘voice of medicine’ versus the ‘voice of the lifeworld’(1984)—seems to complicate donors’ preparation for donation. Donors’ stories are important for addressing these concerns by identifying risks that typically do not get reported in the scientific literature—perhaps owing to a different [End Page 1] conceptualization of what should be construed as noteworthy risks—as well as by demonstrating how personal situations can enhance or detract from the experience overall.This issue of Narrative Inquiry in Bioethics (NIB) affords a unique entrée into both the often heard and unheard stories of living organ donors. A set of topical areas were presented for the authors’ consideration that relate to the donation process in general and the informed consent process more specifically: whether donors were prepared to donate; comprehended what they were told; could have understood the process better, as well as, the impact of donation on health, employment, finances, and personal relationships (Table 1). When soliciting donors’ stories, every effort was made to include a full range of experiences—both good and bad—from a variety of donors: kidney donation, liver donation, adult-to-adult and adult-to-child donation, related, unrelated, directed and anonymous (also known as ‘altruistic’ or ‘good Samaritan’ donors), paired chain exchange, and list exchange (Table 2)—in order to present a balanced perspective on live donation. Additionally, this issue includes a full breadth of stories about the donor experience, ranging from positive to mixed to negative (Table 3). While donors were given tremendous leeway in what stories they told, they were asked to focus their narratives on the lesser known dimensions of donation—the experience of it. While additional stories from liver donors would have helped to underscore common concerns among liver donors, we only received a few. Some of the donors are themselves health care professionals, active in the United Network for Organ Sharing (UNOS) or their local OPO, or have leveraged their experiences to help others by becoming a donor buddy or donor advocate. Given that we received more stories than Click for larger view View full resolutionTable 1.Topical areas to address[End Page 2] Click for larger view View full resolutionTable 2.Forms of Living Donation Click for larger view View... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Home Is Somewhere Else: Autobiography in Two VoicesPatrick HenryHome Is Somewhere Else: Autobiography in Two Voices, by Desider Furst and Lilian R. Furst; xv & 235 pp. Albany: SUNY Press, 1994, $14.95 paper.Published in the “Margins of Literature” series, Home Is Somewhere Else follows a family of three who, on the margins of the Holocaust, live for nine months in Nazi occupied Vienna before escaping illegally in early (...) 1939 into Brussels and then legally to England. The narration goes on to relate both the life of that family in England until the mother’s death in 1969 ended “the symbiotic threesome” (p. 203) and the subsequent emigration of the father and daughter to the United States where, with her retired father, the daughter pursues her career as professor of comparative literature. The final chapter, “As My Father Used to Say,” records the wisdom and witticisms of her father who died in 1985 leaving her alone, in mourning and still deracinated, having become “more [herself] and thereby more other” (p. 217). “My geographical roots are shallow; only those created by the brand mark of the red ‘J’ [meaning “Jew” and stamped on the family passport in Vienna in 1938] run deep into my being” (p. 217).The technical interest of the book resides in its dual autobiographies. Desider, the father, wrote his (entitled A Superfluous Man) in the early 1970s after his retirement and emigration to the United States. Lilian, the daughter, read it in 1983 and found it organized into chapters around places where they had lived. Without rereading it, she began her autobiography in 1991, deciding to write alternative chapters that would be centered on the same places her father had written about: Vienna, Cologne, Brussels, London, Bedford, and Manchester. In addition, he writes a chapter on the Isle of Man where he was interned for four months in 1941 and she on Chertsey where she spent a year alone. She also writes a chapter about her mother’s life and one on her life with her father in America. [End Page 156]Although both autobiographies are completely retrospective accounts composed, without diaries or notes of any kind, decades after the initial events they narrate, each reflects the preoccupations of the narrator at the time of the events being narrated. Thus Lilian’s, composed as “a tribute of [her parents] for bringing [her] through to safety” (p. xiv), contains the child’s impressions of family, friends, home, relatives, and nanny as well as her fear and terror as she experiences the Nazi entry into Vienna in 1938, Crystal Night, the train ride to Cologne, and the flight to Brussels. From Desider’s, on the other hand, emanates the broader vision of the responsible adult, parent and husband, conscious of the historical scope within which his particular drama unravels. He paints in vivid colors the happy decade in Vienna (1928–38), the descent into the hell of Nazism, the struggle to escape “this gigantic prison” (p. 47), and his appreciation and admiration for the British. He underscores the complexity of the situation by populating his account with scores of individuals—unfortunate Jews, sadistic Nazis, good Austrians, profiteers of all kinds—and by frequent conflicting references to Providence, destiny, luck, and the totally gratuitous nature of survival. Written as a memorial to his wife by a man who claims never to have wanted anything more than a normal life for himself and his family, his narration fittingly ends with her death in Manchester in 1969.The power of the book, however, springs as much from what unites the narratives, as from what divides them. I am not speaking of the similarity of events but rather of the deeply held human values (responsibility, courage, sacrifice, family union, interdependence, and love) that resonate powerfully throughout both accounts. Indeed, the intertwining of the two voices is poetically and umbilically linked to the hands of father and daughter that grip each other throughout the narrative. We find a father who risks everything to keep his family together, a mother who gives up her medical career for the same reason, and a daughter, full of gratitude, love, and an intense sense... (shrink)

Mitochondrial replacement technology (MRT) is an emerging and complex bioethical issue. This treatment aims to eliminate maternal inherited mitochondrial DNA (mtDNA) disorders. For Muslims, its introduction affects every aspect of human life, especially the five essential interests of human beings—namely, religion, life, lineage, intellect, and property. Thus, this technology must be assessed using a comprehensive and holistic approach addressing these human essential interests. Consequently, this article analyses and assesses tri-parent baby technology from the perspective of Maqasidic bioethics—that is, Islamic bioethics (...) based on the framework of Maqasid al-Shariah. Using this analysis, this article suggests that tri-parent baby technology should not be permitted for Muslims due to the existence of third-party cell gametes which lead to lineage mixing and due to the uncertain safety of the therapy itself and because the major aim of the technology is to fulfil the affected couples interest to conceive their own genetically healthy child, not to treat and cure mtDNA disorders sufferers. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Parenting Adults with ASD: Lessons for Researchers and CliniciansCassandra R. Newsom, Amy S. Weitlauf, Cora M. Taylor, and Zachary E. WarrenRecent reviews of treatments for individuals with autism spectrum disorders (ASD) reveal how little we still know about how to help adolescents with ASD and their families successfully transition into adulthood (Shattuck et al., 2012b; Taylor et al., 2012a). Shattuck and colleagues found that services in the United States (...) for adults with ASD were marked by high unemployment rates, a reliance on families to provide care across the lifespan, high turnover rates in front-line service providers, insufficient transition planning for high school students, and generally insufficient services to meet current needs. In a recent Agency for Healthcare Research and Quality (AHRQ) Comparative Effectiveness Review, the authors similarly found that there is very little evidence available to pinpoint specific intervention approaches for adolescents and young adults with ASD due to a lack of good quality studies. This was especially true for evidence-based approaches to support the transition of youth with ASD to adulthood (Taylor et al., 2012a).For the last decade, with dramatic increases in both ASD awareness and estimates of ASD prevalence, our field has understandably focused intensely on improving early detection and treatment of ASD. Our diagnostic tools and understanding of ASD presentation in very young children has improved tremendously. Different from many of the young adults in these stories, who were often diagnosed in their early teens, we now aim to identify children well before their third birthdays. Research has consistently shown that early and intense ASD-specific intervention can dramatically enhance outcomes for children with ASD. As such, there has been heavy investment in attempting to take full advantage of this early window of neuro-plasticity. However, as these stories illustrate, these children grow up. Their needs change, and our systems are often poorly equipped to help them live fulfilling lives, capitalize on their talents, and obtain independence and equal access, while still providing a safe, supportive environment. Without readily accessible and understandable coordinated systems of care, parents are forced to adopt the multiple roles of case manager, teacher, therapist, community educator, advocate, job coach, housing specialist, financial planner, and often, lifelong caregiver. These stories eloquently illustrate those struggles and successes.Grief and Joy: Opposite Sides of the Same Parenting CoinThe idea of grieving a diagnosis is controversial. Many of the writers seemed to feel conflicted about their grief responses and the validity of their feelings. Research shows that many families view the diagnostic process as extremely stressful (Siklos & [End Page 199] Kerns, 2005; Heiman, 2002). Feelings of sadness, anxiety, and depression are common at the point of diagnosis and may reemerge as milestones pass unmet. Families must modify the futures they imagined for their children and begin to envision new goals and dreams. Anonymous Three described this process when she wrote:Most children grow up, go to school, get jobs, move out of their parents’ home, etc. My husband and I have had to seriously consider how much of these are even possible for a young man with autism, even one who has a good number of functional life skills.Tasks of adolescence and adulthood such as starting high school, driving a car, and moving out of the house may be delayed and hard won if met. Raising a child with ASD appears to have particular challenges. Throughout this process, families begin to redefine what “success” means. Rather than ascribing to societal standards, they find joy in personal milestones. McDonald described the triumph of teaching his nephew to shake women’s hands instead of touching their hair, an important safety goal that took three months to accomplish. Each family thereby creates its own path.People outside of the family often do not understand the complicated interplay of love and obligation as well as the frustration and fulfillment that families experience. Just like any family, the parents of children with ASD describe many joys in addition to their struggles. They see their children’s strengths in a world that too often focuses on their weaknesses. Gifted with the everyday experience of their child’s development, they see past the necessity of a... (shrink)

Dr Bawa-Garba, a senior paediatric trainee who had been involved in the care of a child who died shortly after admission to hospital, was convicted of gross negligence manslaughter and subsequently erased from the medical register. We argue that criminalisation of doctors in this way is fraught with ethical tensions at levels of individual blameworthiness, systemic failures, professionalism, patient safety and at the interface of the regulator and doctor. The current response to alleged manslaughter during clinical care is (...) not fit for purpose because of its narrow focus on criminalisation and punishment of individual doctors. The justice system fails to take into account systemic issues in a sufficiently proper and informed way particularly in respect of human factors involved in decision-making. It is easier to convict individual doctors for gross negligence manslaughter than it is to effect legal accountability upon organisations. If educational reflections are used to apportion blame, then this could impact detrimentally on honesty and the duty of candour, with negative implications for patient safety. Regulatory processes should not be deployed without consideration of context. There is an urgent need for a fresh and open evaluation of professional and societal expectations from the regulator that should include positive action as well as those that are proportionately punitive. Justice and patient safety would be served better by more sophisticated contextualisation through an approach that balances accountability in healthcare with failures that can occur within complex systems, and by working to a radical shift towards a just culture. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Closing the Gaps in Pediatric HIV/AIDS Care, One Step at a TimeLisa V. Adams, Helga Naburi, Goodluck Lyatuu, Paul Palumbo, and C. Fordham von ReynFatuma's* doctors were completely perplexed. It was 2003 and she had returned to the DARDAR clinic in her hometown of Dar es Salaam, Tanzania three times that week with vague complaints of various pains and aches. Her doctors were considering whether these symptoms were due (...) to the initiation of her recent treatment with antiretroviral medications for her HIV infection or related to the last administration of the investigational tuberculosis (TB) vaccine that the DARDAR Health Study was evaluating. Fatuma's doctor, Dr. Lillian Mtei, consulted with Dartmouth's chief of Infectious Disease, Dr. Ford von Reyn, who happened to be in Dar that week on a site visit. Neither physician could determine the basis for her symptoms. Dr. Mtei returned to the exam room once more and this time emerged with the answer: Fatuma had just learned that her three year old daughter was HIV-infected, likely contracted from Fatuma during or shortly after she gave birth to her daughter. Fatuma believed that her HIV diagnosis was a death sentence for her daughter since antiretroviral therapy was not widely available for children.Dr. von Reyn, Dartmouth's lead clinical researcher in Africa and a father, knew too well the harsh reality of inequities in a resource-limited country. He turned to Dr. Mtei and said decidedly, "we need to do something about this."Thus the DARDAR Pediatric Program was born.Pediatric HIV: A Neglected DiseaseThe need for HIV treatment among children in Tanzania, as in most of sub-Saharan Africa, is compelling. At the end of 2009, approximately 160,000 children aged zero to fourteen in Tanzania were living with HIV (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2011). Even with successful roll out of prevention of mother to child transmission programs in Tanzania, there were nearly 29,000 perinatal infections in 2009. As of December 2010, only 18% of these were enrolled in HIV treatment programs (UNAIDS, 2011; World Health Organization [WHO], 2011). Without antiretroviral therapy (ART), one-half of HIV-infected children will die before their second birthday. Since clinical research to determine efficacy and safety of new medical treatments is conducted almost exclusively in adults, provision of new medical treatments to [End Page 75] children always lags behind advances for adults. Furthermore, children are often underrepresented in programs for antiretroviral drugs for the following reasons: 1) they are not prioritized for care; 2) facilities lack infant diagnostic capabilities; 3) there is limited pediatric HIV training and consequently, a shortage of pediatric providers; and 4) pediatric antiretroviral formulations are frequently unavailable. The unacceptable delays in pediatric HIV drug development and treatment access led the international organization Drugs for Neglected Diseases initiative to publish an editorial in which they referred to pediatric HIV as a "neglected disease" (Lallemant, Chang, Cohen, & Pecoul, 2011).The Tip of the Iceberg: More than Just MedicinesWith a grant from the New York-based Foundation for the Treatment of Children with AIDS, the DARDAR Pediatric Program, a joint collaboration between Geisel School of Medicine at Dartmouth and Muhimbili University of Health and Allied Sciences, began seeing patients in May 2006. It was the first dedicated pediatric HIV Care and Treatment Center in Tanzania and operates in accordance with Tanzania's National AIDS Control Programme's guidance. Testing for both children and infants (the latter of which requires a more sophisticated assay) is available.The day the clinic opened we celebrated this collaborative effort that would provide HIV-infected children in Dar es Salaam access to antiretroviral treatment. One of our first patients was a six-year-old boy whose mother, like Fatuma, was a participant in our TB vaccine trial. She had been advised to bring her son to us for HIV screening. Her son looked healthy so she was surprised and understandably distraught when his test results indicated that not only was he HIV-infected, but his CD4 percentage was very low. His mother was reluctant to have him started on antiretrovirals given his general appearance and young age—and that he was... (shrink)

In vitro fertilisation ‘add-ons’ are therapeutic or diagnostic tools developed in an endeavour to improve the success rate of infertility treatment. However, there is no conclusive evidence that these interventions are a beneficial or effective adjunct of assisted reproductive technologies. Additionally, IVF add-ons are often implemented in clinical practice before their safety can be thoroughly ascertained. Yet, patients continue to request and pay large sums for such additional IVF tools. Hence, this essay set out to examine if it is (...) ethical to provide IVF add-ons when there is no evidence of a benefit if the patient requests it. In order to determine what is ethical—namely, morally good and righteous, the question was considered in relation to three key values of medical ethics—autonomy, beneficence and non-maleficence. It was determined that providing IVF add-ons might be morally acceptable in specific circumstances, if true informed consent can be given, there is a potential of cost-effective physiological or psychological benefit and the risk of harm is minimal, particularly with regard to the unborn child. (shrink)