Due to the potential ethical and psychological implications of screening, and especially inregard of screening on children without available and acceptable therapeutic measures, there is a common view that such procedures are not advisable. As part of an independent research- and bioethical case study, our aim was therefore to explore and describe bioethical issues among a representative sample of participant families (n = 17,055 children) in the ABIS (All Babies In South-east Sweden) research screening for Type 1 diabetes (IDDM).The primary (...) aim is the identification of risk factors important for the development of diabetes and other multifactorial immune-mediated diseases. Four hundred, randomly chosen, participant mothers were asked to complete a questionnaire exploring issues of information, informed consent, bio-material, confidentiality and autonomy, and of prevention/intervention. 293 completed the questionnaire, resulting in a response rate of 73.3%. The majority of questions had the form of 6-point Likert-type response scales (1–6).We found that the majority of respondents felt calm in regard of samples and written material, and also concerning the possibility of their child in the future being identified as having high risk of developing Type 1 diabetes. An important finding concerning access and control of mainly biological data was indicated, with the respondents expressing concern for potential future use. We believe our findings indicate that this kind of empirical studies can substantially contribute to our understanding of bioethical issues of medical research involving genetics. Issues, such as safeguards ensuring theethical criteria of autonomy and respect, were emphasised by our respondents. We believe theissues brought up may promote further discussion, and do suggest issues for consideration by, among others, researchers, bioethicists and Institutional Review Boards. (shrink)

OBJECTIVES: Early-emerging, temperamental differences in fear-related traits may be a heritable vulnerability factor for anxiety disorders. Previous research indicates that the serotonin transporter promoter region polymorphism is a candidate gene for such traits. METHODS: Associations between 5-HTTLPR genotype and indices of fearful child temperament, derived from maternal report and standardized laboratory observations, were examined in a community sample of 95 preschool-aged children. RESULTS: Children with one or more long alleles of the 5-HTTLPR gene were rated as significantly more nervous during (...) standardized laboratory tasks than children who were homozygous for the short alleles. Children homozygous for the short alleles were also rated as significantly shyer, by maternal report, than those with at least one copy of the long allele of the 5-HTTLPR gene. CONCLUSIONS: This study extends the literature linking the short alleles of the serotonin transporter promoter region polymorphism to fear and anxiety-related traits in early childhood and adulthood, and is one of very few studies to examine the molecular genetics of preschoolers' temperament using multiple measures of traits in a normative sample. (shrink)

Background To describe the preferences for disclosure of individual biomarker results among mothers participating in a longitudinal birth cohort. Methods We surveyed 343 mothers that participated in the Health Outcomes and Measures of the Environment Study about their biomarker disclosure preferences. Participants were told that the study was measuring pesticide metabolites in their biological specimens, and that the health effects of these low levels of exposure are unknown. Participants were asked whether they wanted to receive their results and their child's (...) results. In addition, they were asked about their preferred method (letter vs in person) and format (more complex vs less complex) for disclosure of results. Results Almost all of the study participants wanted to receive their individual results (340/343) as well as their child's results (342/343). However, preferences for receiving results differed by education level. Mothers with less than a college degree preferred in-person disclosure of results more often than mothers with some college education or a college degree (34.3% vs 17.4% vs 7.9%, p<0.001). Similarly, mothers with less than a college education preferred a less complex disclosure format than mothers with some college education or a college degree (59.7% vs 79.1% vs 86.3%, p<0.0001). Conclusion While almost all study participants preferred to receive results of their individual biomarker tests, level of education was a key factor in predicting preferences for disclosure of biomarker results. To ensure effective communication of this information, disclosure of biomarker results should be tailored to the education level of the study participants. (shrink)

Children’s exposure to the marketing of energy-dense nutrient-poor (EDNP) foods is a public health concern and marketing investment is known to be shifting to non-broadcast media, such as the Internet. This paper examines the perceptions of parents and children on ethical aspects of food marketing to which children are exposed. The research used qualitative methods with parent-child (aged between 8–13 years), from South Australia. Thirteen parent-child pairs participated in this research. Ethical concerns raised by parents and children included, the marketing (...) of EDNP foods, pester power and family conflict and the use of powerful techniques via the Internet. Their views on rights and responsibilities represented a complex mixture of idealistic and pragmatic positions. They appeared to be caught within the tensions of problematizing unhealthy food marketing to children, both as a social problem and as an individual problem. Their dilemmas are not dissimilar to the broader policy debate in Australia on the matter of food marketing to children. The stale-mate on statutory regulations to protect children from exposure to EDNP food marketing could be advanced by stronger use of ethical arguments to protect children from harmful exploitation and to protect parents from forces that undermine their authority. (shrink)

BackgroundReturning neuroimaging incidental findings may create a challenge to research participants’ health literacy skills as they must interpret and make appropriate healthcare decisions based on complex radiology jargon. Disclosing IF can therefore present difficulties for participants, research institutions and the healthcare system. The purpose of this study was to identify the extent of the health literacy challenges encountered when returning neuroimaging IF. We report on findings from a retrospective survey and focus group sessions with major stakeholders involved in disclosing IF.MethodsWe (...) surveyed participants who had received a radiology report from a research study and conducted focus groups with participants, parents of child participants, Institutional Review Board members, investigators and physicians. Qualitative thematic analyses were conducted using standard group-coding procedures and descriptive summaries of health literacy scores and radiology report outcomes are examined.ResultsAlthough participants reported high health literacy skills, 67 % did not seek medical care when recommended to do so; and many participants in the focus groups disclosed they could not understand the findings described in their report. Despite their lack of understanding, participants desire to have information about their radiology results, and the investigators feel ethically inclined to return findings.ConclusionsThe language in clinically useful radiology reports can create a challenge for participants’ health literacy skills and has the potential to negatively impact the healthcare system and investigators conducting imaging research. Radiology reports need accompanying resources that explain findings in lay language, which can help reduce the challenge caused by the need to communicate incidental findings. (shrink)

Representatives from eight European countries compared the legal, ethical and professional settings within which decision making for neonates takes place. When it comes to limiting treatment there is general agreement across all countries that overly aggressive treatment is to be discouraged. Nevertheless, strong emphasis has been placed on the need for compassionate care even where cure is not possible. Where a child will die irrespective of medical intervention, there is widespread acceptance of the practice of limiting aggressive treatment or alleviating (...) suffering even if death may be hastened as a result. Where the infant could be saved but the future outlook is bleak there is more debate, but only two countries have tested the courts with such cases. When it comes to the active intentional ending of life, the legal position is standard across Europe; it is prohibited. However, recognising those intractable situations where death may be lingering and unpleasant, Dutch paediatricians have reported that they do sometimes assist babies to die with parental consent. Two cases have been tried through the courts and recent official recommendations have set out standards by which such actions may be assessed. (shrink)

Life history theory predicts that exposure to high mortality in early childhood leads to faster and riskier reproductive strategies. Individuals who grew up in a high mortality regime will not overly wait until they find a suitable partner and form a stable union because premature death would prevent them from reproducing. Cox proportional hazard models were used to determine whether women who experienced sibling death during early childhood (0–5 years) reproduced earlier and were at an increased risk of giving birth (...) to an illegitimate child, with illegitimacy serving as a proxy for risky sexual behavior. Furthermore, we investigate whether giving birth out of wedlock is influenced by individual mortality experience or by more promiscuous sexual behavior that is clustered in certain families. Models are fitted on pedigree data from the eighteenth- and nineteenth-century Krummhörn population in Germany. The results show a relationship between sibling death in early childhood and the risk of reproducing out of wedlock, and reproductive timing. The risk of giving birth out of wedlock is linked to individual mortality experience rather than to family-level effects. In contrast, adjustments in connubial reproductive timing are influenced more by family-level effects than by individual mortality experience. (shrink)

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

Background While prenatal surgery historically was performed exclusively for lethal conditions, today intrauterine surgery is also performed to decrease postnatal disabilities for non-lethal conditions. We sought to describe physicians' attitudes about prenatal surgery for lethal and non-lethal conditions and to elucidate characteristics associated with these attitudes. Methods Survey of 1200 paediatric surgeons, neonatologists and maternal–fetal medicine specialists. Results Of 1176 eligible physicians, 670 responded. In the setting of a lethal condition for which prenatal surgery would likely result in the child (...) surviving with a severe disability, most respondents either disagreed or strongly disagreed that they would recommend the surgery. Male physicians were twice as likely to recommend surgery for the lethal condition, as were physicians who believe that abortion is morally wrong. Older physicians were less likely to recommend surgery. For non-lethal conditions, most respondents agreed that they would recommend prenatal surgery, even if the surgery increases the risk of prematurity or fetal death. Compared with MFMs, surgeons were less likely to recommend such surgery, as were physicians not affiliated with a fetal centre, and physicians who were religious. Conclusion Physician’s attitudes about prenatal surgery relate to physicians’ beliefs about disability as well as demographic, cultural and religious characteristics. Given the variety of views, parents are likely to receive different recommendations from their doctors about the preferable treatment choice. (shrink)

A couple may have a child to provide stem cells for another child. They may also use preimplantation testing—even, troubling though it is, prenatal testing and selective abortion—to ensure a close tissue match.

Margaret Reynolds: The Child in Poetry Ken Binmore: The Origins of Fair Play James Simpson: Bonjour Paresse: Waste and Recycling in Book 4 of Gower's Confessio Amantis Ian Hacking: Kinds of People: Moving Targets Adam Smith: Nation and Covenant: The Contribution of Ancient Israel to Modern Nationalism Louise Daston: The Marquis de Condorcet and the Meaning of Enlightenment R J Evans: Coercion and Consent in Nazi Germany Robert Douglas-Fairhurst: A E Housman's Rejected Addresses Bernard Bailyn: The Search for Perfection: Atlantic (...) Dimensions John Stachel: Einstein; Ian Donaldson, Shakespeare, Jonson and the Invention of the Author Neil MacCormick: Judicial Independence: Who Cares? Norman Hammond: Recovering Maya Civilisation Roy Foster: 'Now Shall I Make My Soul': Approaching Death in Yeats's Life and Work Robert Darnton: The Devil in the Holy Water: Political Libel in Eighteenth-Century France. (shrink)

The Physical and Emotional Tormenting Against Animals Scale is a new self-administered scale to measure physical and emotional abuse against animals among adolescents. This study is a first attempt to establish the reliability and validity of this newly developed scale with a non-clinical sample of 1396 Italian adolescents, aged 11-17 years.The scale measures different dimensions of animal abuse, ranging from mild to more severe: bothering, tormenting, hitting, harming, and being cruel to an animal. The scale measures the prevalence and frequency (...) of directed and witnessed abuse against animals. Principal components analysis suggested a two factor solution, with factors labeled "direct" and "indirect" animal abuse; internal consistency was good for each factor.The direct animal abuse factor was significantly correlated with the Child Behavior Checklist's single item assessing engagement in cruelty against animals. These findings suggest that the PET scale has potential as an instrument for the measurement of animal abuse. Future studies of the PET scale's psychometric properties, and cross-validation on new populations, are needed. (shrink)

Using the ideas of Clifford Geertz, Adolf Portmann, Charles Taylor, and others, I seek to develop and expand Polanyi’s account of language and its role in our human way of being bodily mindful in the world. The expansion of Polanyi’s ideas on language in the evolutionary rise of Homo sapiens and in the moral and mental development of the child does two things that I believe are important: (1) obviates the need to appeal to an incorporeal thinking substance - i.e., (...) dualism - to ground the reality of human transcendence, and (2) highlights the place of natural language in the irreducibility of human mentality. (shrink)

This study investigated the performance of boys with psychopathic tendencies and comparison boys, aged 9 to 17 years, on two tasks believed to be sensitive to amygdala and orbitofrontal cortex func- tioning. Fifty-one boys were divided into two groups according to the Psychopathy Screening Device (PSD, P. J. Frick & R. D. Hare, in press) and presented with two tasks. The tasks were the gambling task (A. Bechara, A. R. Damasio, H. Damasio, & S. W. Anderson, 1994) and the Intradimensional/ (...) Extradimensional (ID/ED) shift task (R. Dias, T. W. Robbins, & A. C. Roberts, 1996). The boys with psychopathic tendencies showed impaired performance on the gambling task. However, there were no group differences on the ID/ED task either for response reversal or extradimensional set shifting. The implications of these results for models of psychopathy are discussed. (shrink)

The rapidly increasing number of cases of Zika virus and limited understanding of its congenital sequelae (e.g., microcephaly) led to stories of fear and uncertainty across social media and other mass communication networks. In this study, we used techniques generic to netnography, a form of ethnography, using Internet‐based computer‐mediated communications as a source of data to understand the experience and perceptions of families with infants diagnosed with Zika‐related microcephaly. We screened 27 YouTube™ videos published online between October 2015 and July (...) 2016, during which the Zika epidemic started, peaked, and declined. We identified three themes: (a) experiencing the news of a diagnosis of Zika‐associated microcephaly; (b) experiencing feelings and expectations of the ‘imperfect’ child; and (c) seeking to understand microcephaly to care for the child. We found that families experienced distressing feelings of shock, sadness, hopelessness, and pain, while dealing with emerging and sometimes conflicting information being transmitted by news outlets, uncertainty about the child's health, and healthcare providers’ lack of clarity to guide the family members. The ‘unknown’ factor of ZIKA was an additional stressful factor in the experience of the families. (shrink)

Digeser contends that our rich and varied practices of friendship multiply and moderate connections to politics. Along the way, she sets forth a series of ideals that appreciates friendship's many forms and its dynamic relationship to individuality, citizenship, political and legal institutions, and international relations.

I adopt a cladistic view of species, and explore the possibility that there exists an equally valuable cladistic view of organismic traits. This suggestion seems to run counter to the stress on functional views of biological traits in recent work in philosophy and psychology. I show how the tension between these two views can be defused with a multilevel view of biological explanation. Despite the attractions of this compromise, I conclude that we must reject it, and adopt an essentially cladistic (...) conception of biological traits. (shrink)

Assuming it rational to treat other persons' probabilities as epistemically significant, how shall their judgements be weighted (Barnes [1998])? Several plausible methods exist, but theorems in classical psychometrics greatly reduce the importance of the problem. If scientists' judgements tend to be positively correlated, the difference between two randomly weighted composites shrinks as the number of judges rises. Since, for reasons such as representative coverage, minimizing bias, and avoiding elitism, we would rarely employ small numbers of judges (e.g. less than 10), (...) the difference between two weighting systems becomes negligible. Suggestions are made for quantifying verisimilitude, identifying 'types' of scientists or theories (taxometrics), inferring latent factors, and estimating reliability of pooled judgements. (shrink)

The global workspace architecture is examined from an evolutionary perspective. It is argued that certain aspects of the theory are difficult to account for in terms of a sequence of evolutionary elaborations. These notably include distinct actors and audience members, and the lingua franca by which they communicate. An alternative metaphor of a ‘global arena’ is suggested, along with speculation on how this bottleneck of behavioural competition may have evolved toward a more sophisticated architecture, perhaps even a theatre . . (...) . (shrink)

Modal interpretations take quantum mechanics as a theory which assigns at all times definite values to magnitudes of quantum systems. In the case of single systems, modal interpretations manage to do so without falling prey to the Kochen and Specker no-go theorem, because they assign values only to a limited set of magnitudes. In this paper I present two further no-go theorems which prove that two modal interpretations become nevertheless problematic when applied to more than one system. The first theorem (...) proves that the modal interpretation proposed by Kochen and by Dieks cannot correlate the values simultaneously assigned to three systems. The second and new theorem proves that the atomic modal interpretation proposed by Bacciagaluppi and Dickson and by Dieks cannot correlate the values simultaneously and sequentially assigned to two systems if one assumes that these correlations are uniquely related to the dynamics of the state of the systems. (shrink)