A scientific paradigm typically embraces research norms and values, such as truth-seeking, critical thinking, disinterestedness, and good scientific practice. These values should prevent a paradigm from introducing defective assumptions. But sometimes, scientists who are also physicians develop clinical norms that are in conflict with the scientific enterprise. As an example of such a conflict, we have analyzed the genesis and development of the shaken baby syndrome paradigm. The point of departure of the analysis is a recently conducted systematic literature (...) review, which concluded that there is very low scientific evidence for the basic assumption held by Child Protection Teams: when certain signs are present the infant has been violently shaken. We suggest that such teams have developed more value-based than scientific-based criteria when classifying SBS cases. Further, we suggest that the teams are victims of “groupthink,” aggravating the difficulties in considering critics’ questioning the criteria established by the teams. (shrink)

Interest in children’s agency within the research process has led to a renewed consideration of the relationships between researchers and children. Child protection concerns are sometimes not recognised by researchers, and sometimes ignored. Yet much research on children’s lives, especially in health, has the potential to uncover child abuse. University research guidance should be in place to safeguard both researchers and the populations under scrutiny. The aim of this study was to examine university guidance (...) on protecting children in research contexts. (shrink)

In Child Abuse, Family Rights, and the Child Protective System: A Critical Analysis from Law, Ethics, and Catholic Social Teaching, Stephen M. Krason gathers essays by leading scholars and practitioners to comment through the prism of Catholic social thought, on the plight afflicting American families and the role of the child protective system. Here readers will find critical essays on the deleterious effect of the 1974 passage of the Child Abuse Prevention and Treatment Act; assessments of (...) current American policies on child abuse and neglect and the role of the CPS within the context of prevailing international human rights principles and Catholic social teaching; a survey of the enforcement of CPS policies from a legal and constitutional perspective; research data disputing the CPS principle that all parents are potential abusers and illustrating the greater prevalence of abuse and neglect in broken, “blended,” and “untraditional” families; and arguments for poverty and unemployment as the prime culprits in the mistreatment of children. Also included are the amicus curiae briefs that the Society of Catholic Social Scientists submitted in two U.S. Supreme Court cases on parental rights, the CPS, and state control over the family. (shrink)

Numerous laws have passed to move away from criminalising youth who trade sex. Specialised courts have also been established to support youth. Despite proponents' contention that specialised, trauma-informed courts are less punitive than typical interventions, research is limited. This article explores one specialised dependency court's efforts to assist youth ‘at risk’. Drawing on interviews and ethnographic observations, I argue that laws and trauma-informed court interventions intensify the supervision of youth and families while inadvertently concealing the gendered-racialised effects of (...) class='Hi'>child welfare system involvement. Ethnographic findings contribute to sociolegal and anti-carceral feminist research on carceral control beyond the criminal legal system. This work also explores the ethics of carceral-trauma entanglements that accompany decriminalisation’s afterlife. (shrink)

The paper seeks to analyze children’s bodily vulnerability as grounded in generational order. The thesis is put forward, that the generational order is embodied via body techniques of vulnerability, deployed both by adults and children. In presenting results from research on professional responses to child maltreatment and neglect, three sets of age related body techniques of vulnerability are identified, concerning caregivers, professionals and the children itself.

For many rare diseases, the availability of effective interventions is limited or non-existent. In this context, clinical research evaluating emerging interventions may be the only potentially “the...

Since children are considered incapable ofgiving informed consent to participate inresearch, regulations require that bothparental permission and the assent of thepotential child subject be obtained. Assent andpermission are uniquely bound together, eachserving a different purpose. Parentalpermission protects the child from assumingunreasonable risks. Assent demonstrates respectfor the child and his developing autonomy. Inorder to give meaningful assent, the child mustunderstand that procedures will be performed,voluntarily choose to undergo the procedures,and communicate this choice. Understanding theelements of informed consent (...) has been theparadigm for assessing capacity to give assent.This method leaves the youngest, leastcognitively mature children vulnerable towaiver of assent and forced researchparticipation. Voluntariness can also becompromised by the influence of authorityfigures who can exert undue influence andcoerce children to participate in research. This paper discusses factors that may influencethe decision to give assent/permission,potential parent-child conflict in theassent/permission process and how it isresolved, and potential parental undueinfluence on research participation. Theseissues are illustrated with quotations drawnfrom a larger qualitative study of parentalpermission and child assent (data notpresented). We suggest a developmentalapproach, viewing assent as a continuum rangingfrom mere affirmation in the youngest childrento the equivalent of the informed consentprocess in the mature adolescent. (shrink)

Background Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. Methods We followed PRISMA guidelines and Arksey and O’Malley’s approach for charting and synthesizing (...) evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. Results We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. Conclusions Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children. (shrink)

As the expansion of the Internet and the digital formatting of all kinds of creative works move us further into the information age, intellectual property issues have become paramount. Computer programs costing thousands of research dollars are now copied in an instant. People who would recoil at the thought of stealing cars, computers, or VCRs regularly steal software or copy their favorite music from a friend's CD. Since the Web has no national boundaries, these issues are international concerns. The (...) contributors-philosophers, legal theorists, and business scholars, among others-address questions such as: Can abstract ideas be owned? How does the violation of intellectual property rights compare to the violation of physical property rights? Can computer software and other digital information be protected? And how should legal systems accommodate the ownership of intellectual property in an information age? Intellectual Property is a lively examination of these and other issues, and an invaluable resource for librarians, lawyers, businesspeople, and scholars. (shrink)

Understanding Child and Adolescent Behaviour in the Classroom is a vital guide for pre-service and in-service teachers, providing the tools to respond effectively and ethically to child and adolescent behaviour that is of concern. In this innovative book, expert authors offer 'positive rules' that will assist educators in their classroom practice. Key practical issues that are addressed include: • Building a purposeful and emotionally and psychologically positive classroom culture • Recognising and responding to children who present with social, (...) emotional and behavioural difficulties • Using research to inform and enrich classroom practice around student conduct • Working collegially to respond to the social, emotional and/or behavioural needs of individual students, including those needs associated with poor mental health and/or child protection Cutting-edge research from psychology, behavioural science and education is accessibly presented to help develop professional expertise and knowledge in the area of child and adolescent behaviour. (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)

This paper argues the case for taking a critical realist (CR) approach to social work research. The normativity in social work is often under-communicated in the social sciences, resulting in research that has an unclear value base as its starting point. Social work practice promotes social change and people's development, empowerment, and liberation. By taking a CR of view as a starting point for researching social problems, the focus shifts towards explaining phenomena by revealing and discussing the mechanisms (...) through which they are produced and maintained. Child welfare issues are argued to be “wicked problems”, on top of which the practice of social work itself is a complex field. Two studies from the field of child and family welfare are presented here to illustrate how CR has been fruitfully applied in research on such complex phenomena. These two studies comprise research on child protection assessment and parental high conflict. (shrink)

Federal guidelines require that informed consent be obtained from participants when they are enrolled in a research study. When conducting research with children, the guidelines utilize the term permission to describe parents' agreement to enroll their children in a study. The basic components of consent and permission are well described and identical, with the exception of the person for whom the decision to participate is being made. Beyond permission, when enrolling minor participants in research, affirmative agreement to (...) participate in research or assent must be obtained from the child participants themselves. The concept of children's assent to research, however, is poorly defined, resulting in inconsistency in its pursuit and, consequently, in its utility. The interface between cognitive development, emotional, and social development must be examined as it pertains to this special situation of decision making. For this process to meaningfully protect minors, the assent process must be clarified, decisions regarding parental veto power must be more convincingly justified, and researchers must be better educated and held accountable for the valid execution of this process. Strategies for implementing the assent process more effectively are presented. (shrink)

Child and adolescent researchers must balance increasingly complex sets of ethical, legal, and scientific standards when investigating child and adolescent mental disorders. Few guidelines are available. One mechanism that provides the investigator immunity from legally compelled disclosure of research records is described. However, discretion must be exercised in its use, especially with regard to abuse reporting, voluntary disclosure of abuse, and protection of research data. Examples of discretionary issues in the use of the certificate of (...) confidentiality are provided. (shrink)

Child Law starts with the question "Who is the Child?" In direct contrast to the CRC, which calls for putting the interests of the child first in all policies dealing with children, it appears that the interests of others are the major consideration de facto. In law, children's right to protection is severely limited by the presence of a maximum age limit, with no consideration of the starting point: current and ongoing scientific research has demonstrated (...) the effects of this non-consideration in a number of abnormalities and diseases, not only in children, but in adults and the elderly. The WHO has published a number of studies to that effect, and the 2012 Report on Endocrine Disruptors more than confirms this claim. This and other scientific insights that have largely been ignored show the flaws and inadequacies of the legal regimes intended to protect children, in a number of areas, from the basic public health to the right to normal development; child labor law conventions; in conflict situations; as a result of climate and other events; children as illegal migrants; and as inmates in prison camps. (shrink)

Special moral, regulatory, and scientific questions surround the inclusion of children in health-related research. These questions arise from a fundamental moral tension between the obligation to expose children to research participation to ensure that they share in the benefits that arise from it and the obligation to protect them from the harms associated with their inappropriate involvement in research. This tension is felt in the development of moral and regulatory frameworks for the protection of child (...) research subjects and in the implementation and interpretation of these frameworks by institutional review boards. (shrink)

The ethics of research projects has become a central aspect in the discussion of how research is conceived and planned in social work and the broader social sciences. Ethics committees play an impo...

We argue that the current ethical and regulatory framework for permissible risk levels in pediatric research can be helpfully understood in terms of children’s moral right to adequate protection from harm. Our analysis provides a rationale for what we propose as the highest level of permissible risk in pediatric research without the prospect of direct benefit: what we call “relatively minor” risk. We clarify the justification behind the usual standards of “minimal risk” and “a minor increase over (...) minimal risk” and explain why it is permissible to impose any risks at all on child participants who do not stand to benefit directly from enrollment in research. Finally, we illuminate some aspects of the concept of “best interests.”. (shrink)

In the last decade, there has been an increased focus on child protection cases in the European Court of Human Rights. The heightened attention on child protection underscores the actuality of children’s rights, rendering it an interesting area for researchers in fields such as children’s rights, child protection, or international relations. All judgments from the Court are public. Research on social media data has shown that public data is not necessarily intended for the (...) public. Moreover, in child protection cases, the child is rarely a part of the case. It is the biological parents against the domestic authorities. Nevertheless, the situation the case revolves around includes the child, making the child an indirect part of the judgment. There is little research on the ethical considerations of indirectly involving children in research on court judgments. However, there is abundant research on ethical considerations in researching public data, specifically social media data. By drawing on research on ethical considerations in the use of social media data, this article delves into the ethical consequences of including children indirectly in research. The article pinpoints crucial areas that require special attention from researchers and provides insights on navigating ethical challenges effectively. (shrink)

Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care (...) and good outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine “protection” of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research. (shrink)

This paper aims to reflect upon ethical dilemmas arising from educational research in humanitarian contexts, particularly when involving children. In recognition of the paucity of knowledge on how...

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. (...) REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs. (shrink)

The United Nations Convention on the Rights of the Child sets out the rights to which all children should have access. Included in the Convention is children’s right to participate and have a say in matters affecting them. This right is equally applicable within a research context as it is in children’s everyday lives. This desk-top study reviews published ethics guidelines and university ethics documents associated with research involving children in school contexts, to determine the presence of (...) children’s participation rights. It draws attention to how growing understandings of children’s participation rights, and the ethical issues associated with these, are inadequately encompassed within ethics guidelines and documents. (shrink)

There is currently no consensus from the relevant stakeholders regarding the operational and construct definitions of child assent for research. As such, the requirements for assent are often construed in different ways, institutionally disparate, and often conflated with those of parental consent. Development of a standardized operational definition of assent would thus be important to ensure that investigators, institutional review boards, and policy makers consider the assent process in the same way. To this end, we describe a Delphi (...) study that provided consensus from a panel of expert stakeholders regarding the definitions of child assent for research. Based on current guidelines, a preliminary definition of assent was generated and sent out for review to a Delphi panel including pediatric bioethicists and researchers, Institutional Review Board members, parents, and individuals with regulatory/legal expertise. For each subsequent review, the process of summarizing and revising responses was repeated until consensus was achieved. Panelists were also required to rank order elements of assent that they believed were most important in defining the underlying constructs of the assent process. In providing these rankings, panelists were asked to frame their responses in the contexts of younger and adolescents/older children in non-therapeutic and therapeutic trials. Summary rankings of the most important identified elements were then used to generate written construct definitions which were sent out for iterative reviews by the expert panel. Consensus regarding the operational definition was reached by 14/18 of the panel members. Seventeen panelists agreed with the definitions of capacity for assent, elements of disclosure for younger children, and the requirements for meaningful assent, respectively. Fifteen members agreed with the elements of disclosure for adolescents/older children. It is hoped that this study will positively inform and effect change in the way investigators, regulators, and IRBs operationalize the assent process, respect children’s developing autonomy, and in concert with parental permission, ensure the protection of children who participate in research. (shrink)

Background Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable? Research question In this article, we discuss the role of parents in neonatal decision-making, based on the following research question: Should (...) parents decide whether to provide lifesaving treatment when their child is born at the limit of viability? Research design We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014–2018. Ethical considerations All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study. Findings We identified six main themes in parents’ responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief. Conclusion The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for ‘everything to be done’. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child. (shrink)

The study draws from learning experiences in Latin America with emphasis on the concept protagonismo infantil. Child protagonism results in new understandings of childhood experiences in mission and development work today. The research focuses on the role children play in society and it looks to children as social actors who are participants in looking for solutions to problems affecting local communities. Children are often perceived as passive recipients in need of care. Without disregarding the need to protect and (...) care for children, the study argues that children, as protagonists, seek to bring innovative solutions to community needs. (shrink)

This article reviews pertinent literature and presents findings from recent research to illustrate how CAFCASS (Children and Family Court Advisory and Support Service) private law practitioners understand, experience and manage the tension between empowerment and protection in welfare report enquiries. The traditional approach in the United Kingdom has been for children to be protected, especially when their divorced or separated parents are in conflict, but the balance is changing, as calls for the active participation of children in decisions (...) that affect them continue to grow louder. (shrink)

Various government efforts to address the exploitation of street beggars have yet to be fully effective, especially in Medan City. This research aims to explore and understand how the practice of street begging exploitation and its social and economic impacts. The method used is qualitative research with a case study approach. The data was collected through in-depth interviews, observations, and focus group discussions involving the Medan City government, non-governmental organizations, and other stakeholders, especially street child beggars. The (...) results showed that the exploitation of street children in Medan City continues to increase, which reflects the problems of poverty and poor child protection. The characteristics of street child beggars in Medan are diverse, with different modes of begging. On the other hand, the Medan City Government has enacted Regional Regulation No. 6 Year 2003 to address this issue, but its implementation could have been more optimal. As the responsible party, the Social Affairs Office of Medan City has made various efforts, such as coaching and rehabilitation, but the number of street children is increasing. This research concludes that a more integrated approach and cooperation with related parties is needed to address the problem of street beggars' exploitation effectively. (shrink)

In this article, we explore the ethical issues related to the reporting of suspected abuse or neglect in research involving children. Ethical dilemmas related to reporting child maltreatment are often complex because the rights of children and their adult caregivers may conflict and determinations of abuse or neglect are socially constructed judgments that depend on particular circumstances. We argue that when reporting is legally mandated, investigators must follow the law and report their suspicions to Child Protective Services. (...) When reporting is not legally mandated, investigators still have an ethical obligation to report to help prevent additional maltreatment and allow children to obtain access to services needed to recover from abuse or neglect. We also argue that investigators should include plans and procedures in the research protocol for making reports and training research staff in recognising evidence of child abuse or neglect. Although investigators should report evidence of abuse or neglect that is discovered incidentally, they have no mandate to actively search for such evidence when it is not related to the study’s objectives. Investigators should also inform parents and children about their obligations to report suspected abuse or neglect. (shrink)

Children may be abused physically, sexually, emotionally and by omission or commission in any permutation under these headings. This is discussed in terms of the separate and overlapping responsibilities of parents, guardians, the community in which they live and the network of professional services developed to care for, protect and educate children. An attempt is made to place these issues within an ethical framework, with regard to the legislature of England and Wales. It is argued that professionals working within this (...) field have an obligation either to keep up to date in respect of a large and growing body of research and practice knowledge or to consult 'experts' within the field when making complex and far-reaching decisions on behalf of abused children and their families. A representative, inevitably incomplete, bibliography is discussed and appended and there is brief reference to the role of expert witnesses concerning children involved in civil legal proceedings. (shrink)

Current UK guidelines regarding clinical research on children permit research that is non-therapeutic from the perspective of that particular child. The guidelines permit research interventions that cause temporary pain, bruises or scars. It is argued here that such research conflicts with the Declaration of Helsinki according to which the interests of the research subject outweigh all other interests. Given this, in the context of clinical research, who is best placed to protect the (...) class='Hi'>child from this kind of exploitation? Is it the medical researcher, the child’s parents or the nurse advocate? This article describes the problem, possible responses to it, and closes with a consideration of, and rejection of, a defence of current guidelines that claims moral parity between clinical research and clinical education. (shrink)

Pornographic content is harmful to children's psychological and mental development. In Indonesia, many children are involved in activities and access pornographic content through social media. In some cases, children exposed to pornography will experience a decrease in IQ and mental disorders in terms of sexuality. This type of research is descriptive-qualitative identifying, explaining, and analysing a phenomenon based on variables and primary and secondary data. The purpose of this research is to find out the impact of pornographic content (...) on social media for children's psychology and how the Indonesian government's policy addresses the problem. The results of this study show that the psychological impact of child victims of pornography include: anxiety and stress disorders, sexual perception deviations, identity and body image disorders, decreased social interaction skills, difficulty concentrating on learning and poor self-image. The Indonesian government's policy to protect children from pornography is carried out through penal means using criminal law enforcement instruments, as well as non-penal means, namely cooperation between countries and global child protection organisations, blocking content, and educating understanding of using a healthy internet. (shrink)

Background: Hospitalized children have the right to “partake in practices related to their treatment and care.” Midwives and nurses have important roles and responsibilities regarding the protection and enforcement of these rights, such as providing information and advocating for children. Objectives: This study aims to determine the attitudes of midwives and nurses toward their roles and responsibilities in the implementation of child rights in healthcare services and the factors affecting their attitudes. Methods: This descriptive cross-sectional study included 122 (...) midwives and nurses in total. The data were collected through a questionnaire. Ethical considerations: Written permission was obtained from an ethics committee in the center of the city where the research was conducted. Results: The mean age of the participants was 36.70 ± 8.03 years; 58.9% of midwives and nurses stated that they understood the child’s consent about the treatment by looking at the child’s facial expression; 36% of midwives and nurses stated that children could not participate in decisions regarding their own health. It was observed that obtaining the child’s consent in matters related to treatment does not make any difference between midwives and nurses. The rate of the midwives stating that they would report suspicious violence-neglect and abuse was found to be higher. Conclusion: The variables of the unit of employment, the state of having children, choosing the profession and practicing in it willingly, and getting training on children’s rights make a difference in terms of children’s rights in healthcare services. Midwives and nurses should be reminded of child rights in healthcare services through regular in-service training programs. (shrink)

This essay reflects on arguments by Paul Ramsey, in The Patient as Person: Explorations in Medical Ethics (1970) and elsewhere, that continue to challenge policy‐makers and those doing clinical and translational research involving children. Ramsey argued that parents cannot morally authorize their child's participation in research unless the research is designed to benefit the child. He acknowledged that abiding by this position could have adverse impacts on improving child health, and he concluded, in a (...) 1976 Hastings Center Report piece, that researchers must “sin bravely.” Many philosophers and theologians, including Richard McCormick, have argued against Ramsey. The Ramsey‐McCormick debate played out in the bioethics literature and, by invitation, at the deliberations of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, which was tasked with developing an ethics framework and policies for human subjects protections. Although in its final recommendations, the commission sided with McCormick, the strict limitations on risks and harms to which a child can be exposed were clearly influenced by Ramsey. (shrink)

This article first summarizes research regarding the relationship between sports that intentionally structure multiple types of brain trauma into their practice, such as rugby and boxing, and the range of negative health outcomes that flow from participation in such sports. The resultant brain injuries are described as ‘now’ and ‘later’ diseases, being those that affect the child immediately and then across their lifetime. After highlighting how these sports can permanently injure children, it examines this harm in relation to (...) existing British laws and policies concerning child abuse. The conclusion drawn is that neither children nor adults on their behalf are legally able to give informed consent for participation, and that impact sport organisations effectively groom children into sustaining and accepting brain trauma. Adults providing brain-traumatizing versions of these sports are thus described as being complicit in a form of child abuse that we term brain abuse. The contradictions in existing sports policy are highlighted, where policy describes that children are to be protected from harm, and yet the very practice of such sports creates harm by design. Implications of the argument are that children should be prohibited from partaking in impact sports. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind (...) the Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

When environmental health researchers study hazards in the home, they often discover information that may be relevant to protecting the health and safety of the research subjects and occupants. This article describes the ethical and legal basis for a duty to warn research subjects and occupants about hazards in the home and explores the extent of this duty. Investigators should inform research subjects and occupants about the results of tests conducted as part of the research protocol (...) only if the information is likely to be accurate, reliable, and medically useful. Investigators should warn subjects and occupants about hazards they happen to discover while they are in the home, if a reasonable person would warn the subjects and occupants about those hazards. Investigators should not report illegal hazards discovered in the home to the authorities, unless those hazards constitute abuse or neglect of children or mentally disabled people living in the home. When investigators decide to warn research subjects and occupants about hazards in the home, they should take some steps to help them make effective use of this information, such as providing additional counselling or making a referral for remediation or medical treatment. Investigators should discuss these issues with research subjects during the informed consent process. (shrink)

To protect children in research, procedures that are not administered in the medical interests of a child must be restricted. The risk threshold for these procedures is generally measured according to the concept of minimal risk. Minimal risk is often defined according to the risks of “daily life.” But it is not clear whose daily life should serve as the baseline; that is, it is not clear to whom minimal risk should refer. Commentators in research ethics often (...) argue that “minimal risk” should refer to healthy children or the subjects of the research. I argue that neither of these interpretations is successful. I propose a new interpretation in which minimal risk refers to children who are not unduly burdened by their daily lives. I argue that children are not unduly burdened when they fare well, and I defend a substantive goods account of children’s welfare. (shrink)

BackgroundAs the number of randomised controlled trials of medicines for children increases, it becomes progressively more important to understand the experiences of parents who are asked to enrol their child in a trial. This paper presents a narrative review of research evidence on parents' experiences of trial recruitment focussing on qualitative research, which allows them to articulate their views in their own words.DiscussionParents want to do their best for their children, and socially and legally their role is (...) to care for and protect them yet the complexities of the medical and research context can challenge their fulfilment of this role. Parents are simultaneously responsible for their child and cherish this role yet they are dependent on others when their child becomes sick. They are keen to exercise responsibility for deciding to enter a child in a trial yet can be fearful of making the 'wrong' decision. They make judgements about the threat of the child's condition as well as the risks of the trial yet their interpretations often differ from those of medical and research experts. Individual parents will experience these and other complexities to a greater or lesser degree depending on their personal experiences and values, the medical situation of their child and the nature of the trial. Interactions at the time of trial recruitment offer scope for negotiating these complexities if practitioners have the flexibility to tailor discussions to the needs and situation of individual parents. In this way, parents may be helped to retain a sense that they have acted as good parents to their child whatever decision they make.SummaryDiscussing randomised controlled trials and gaining and providing informed consent is challenging. The unique position of parents in giving proxy consent for their child adds to this challenge. Recognition of the complexities parents face in making decisions about trials suggests lines for future research on the conduct of trials, and ultimately, may help improve the experience of trial recruitment for all parties. (shrink)

United States federal regulations for pediatric research with no prospect of direct benefit restrict institutional review board (IRB) approval to procedures presenting: 1) no more than "minimal risk" (§ 45CFR46.404); or 2) no more than a "minor increase over minimal risk" if the research is commensurate with the subjects' previous or expected experiences and intended to gain vitally important information about the child's disorder or condition (§ 45CFR46.406) (DHHS 2001). During the 25 years since their adoption, these (...) regulations have helped IRBs balance subject protections with the pursuit of scientific knowledge to advance children's welfare. At the same time, inconsistency in IRB application of these regulations to pediatric protocols has been widespread, in part because of the ambiguity of the regulatory language. During the past decade, three federally-charged committees have addressed these ambiguities: 1) the National Human Research Protections Advisory Committee (NHRPAC) (Washington, DC), 2) the Institute of Medicine (IOM) Committee on the Ethical Conduct of Clinical Research Involving Children (Washington, DC); and 3) the United States Department of Health and Human Services Secretary's Advisory Committee for Human Research Protections (SACHRP) (Washington, DC). The committees have reached similar conclusions on interpretation of language within regulations § § 45CFR46.404 and 406; these conclusions are remarkably consistent with recent international recommendations and those of the original National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1977) report from which current regulations are based. Drawing on the committees' public reports, this article identifies the ethical issues posed by ambiguities in regulatory language, summarizes the committees' deliberations, and calls for a national consensus on recommended criteria. (shrink)

In Grimes v. Kennedy Krieger Institute (KKI), the Maryland Court of Appeals, while noting that U.S. federal regulations include risk standards for pediatric research, endorses its own risk standards. The Grimes case has implications for the debate over whether the minimal risk standard should be interpreted based on the risks in the daily lives of most children (the objective interpretation) or the risks in the daily lives of the children who will be enrolled in a given study (the subjective (...) interpretation). The court's use of the objective interpretation to block studies like the KKI study protects individual children who are worse off than the average child. Unfortunately, this approach also may block research intended to improve the lives of these same individuals. A similar dilemma arises in the context of multinational research, suggesting that a "modified objective standard," proposed to address this dilemma in the multinational setting, may offer a framework for addressing the dilemma in the context of pediatric research as well. (shrink)

Sudden infant death syndrome (SIDS) has been mainly described from a risk perspective, with a focus on endogenous, exogenous, and temporal risk factors that can interact to facilitate lethal outcomes. Here we discuss the limitations that this risk-based paradigm may have, using two of the major risk factors for SIDS, prone sleep position and bed-sharing, as examples. Based on a multipronged theoretical model encompassing evolutionary theory, developmental biology, and cultural mismatch theory, we conceptualize the vulnerability to SIDS as an imbalance (...) between current physiologic-regulatory demands and current protective abilities on the part of the infant. From this understanding, SIDS appears as a developmental condition in which competencies relevant to self-protection fail to develop appropriately in the future victims. Since all of the protective resources in question are bound to emerge during normal infant development, we contend that SIDS may reflect an evolutionary mismatch situation—a constellation in which certain modern developmental influences may overextend the child’s adaptive (evolutionary) repertoire. We thus argue that SIDS may be better understood if the focus on risk factors is complemented by a deeper appreciation of the protective resources that human infants acquire during their normal development. We extensively analyze this evolutionary-developmental theory against the body of epidemiological and experimental evidence in SIDS research and thereby also address the as-of-yet unresolved question of why breastfeeding may be protective against SIDS. (shrink)

The first principle of the Nuremberg Code requires the informed consent of the subject. Proxy consent was not addressed until the Declaration of Helsinki. U.S. policies regarding consent for the participation of children in research would not be finalized for almost two more decades in subpart D of the federal regulations that govern the participation of subjects in research. In October 2000, the Children's Health Act was passed. Title X required the Secretary of the Department of Health and (...) Human Services to conduct a review of the regulations under subpart D and “to consider any modifications necessary to ensure the adequate and appropriate protection of children participating in research, and report the findings of the Secretary to Congress.” In this article, I provide a brief overview of the current informed consent requirements in pediatric research, which include requirements for parental permission and the child's assent. I then examine the moral bases for these requirements; whether the current policies are consistent with these moral foundations; and if not, how the policies ought to be modified. a. (shrink)

Ethical issues regarding research biobanks continue to be a topic of intense debate, especially issues of confidentiality, informed consent, and child participation. Although considerable empirical literature concerning research biobank ethics exists, very little information is available regarding the opinions of medical professionals doing genetics research from the Middle East, especially Arabic speaking countries. Ethical guidelines for research biobanks are critically needed as some countries in the Middle East are starting to establish national research biobanks. (...) Islam is the dominant religion in these countries, and it affects people’s behavior and influences their positions. Moreover, communities in these countries enjoy a set of customs, traditions and social norms, and have social and familial structures that must be taken into account when developing research policies. We interviewed 12 medical professionals from the Middle East currently working with stored tissue samples to document their opinions. We found general agreement. Participants’ primary concerns were similar to the views of researchers internationally. Since children tend to represent a high percentage of Middle Eastern populations, and because children’s bodies are not just small adult bodies, the interviewed professionals strongly believed that it is imperative to include children in biobank research. Participants generally believed that protecting confidentiality is socially very important and that informed consent/assent must be obtained from both adult and child participants. This study provides a starting point for additional studies. (shrink)

The future health of children depends on clinical research which is an important part of medical progress. The principles of the child’s best interests standards and how it is applied in the context of research are explored. This review will show that there is a need for research involving children but there are gaps in the current legal and ethical framework which are not readily applicable to non-therapeutic research involving children. There are significant challenges in (...) trying to achieve a balance between what is socially good and the obligation to protect children who participate in research. (shrink)

Adverse childhood experiences are prevalent in many western populations. Large studies have put the likelihood of having at least one ACE above 50% of the general population. ACEs and the associated experience of chronic stress, moreover, have been consistently linked with a variety of negative physical and psychological health outcomes across the lifespan from behavioral problems and cognitive difficulties early on, to greater chance of suffering from a mental health disorder and engaging in self destructing behaviors. The literature puts forward (...) several protective factors, such as mother-child relations, parental health, and community engagement. In this perspective paper we put forward the potential of regular nature engagement as a possible additional protective factor. Nature’s therapeutic potential has been well documented, for many psychopathologies and mental health difficulties. Yet studies looking at the protective and therapeutic potential of nature with people with ACEs are remarkably limited in numbers. In this perspective piece we conduct a search of the literature to find previous applications of nature as a protective or therapeutic intervention for people with ACEs. We highlight the gap in the current literature, and put forward various mechanisms of action that justify a closer exploration of this area in further research. (shrink)

Studies of the challenges faced by women in policing have paid little attention to the specific experiences of policewomen who are mothers. Guided by critical theorizing on the gendered nature of the police culture and domestic labor, 16 police officer mothers in Ontario, Canada, were interviewed. Our qualitative analyses explore their experiences of the “lion’s share” of domestic labor; the organizational, cultural, and operational features of policing; and the challenges of child care, and examine how these combine to foster (...) particular stresses. In contrast to intensive mothering approaches that rely on the advice of external experts, our participants work to protect children by carefully constructing stories and asking questions that are based on their own on-the-job experiences with dangerous and/or abhorrent situations. As such, they engage in danger-protection parenting practices to prevent their children from becoming victims or offenders. Our research extends the theorizing on intensive/extensive mothering practices, builds on the scholarship on policing, and adds to the literature on women in nonstandard occupations. This sociological analysis of police mothers’ experiences and practices underscores the importance of understanding and working to change the social contexts, at work and at home, that compromise the well-being of police mothers and other emergency-response workers. (shrink)

There is consensus that children have questionable decisional capacity and, therefore, in general a parent or a guardian must give permission to enroll a child in a research study. Moreover, freedom from duress and coercion, the cardinal rule in research involving adults, is even more important for children. This principle is embodied prominently in the Nuremberg Code (1947) and is embodied in various federal human research protection regulations. In a program named "SATURN" (Student Athletic Testing (...) Using Random Notification), each school in the Oregon public-school system may implement a mandatory drug-testing program for high school student athletes. A prospective study to identify drug use among student-athletes, SATURN is designed both to evaluate the influence of random drug testing and to validate the survey data through identification of individuals who do not report drug use. The enrollment of students in the drug-testing study is a requirement for playing a school sport. In addition to the coercive nature of this study design, there were ethically questionable practices in recruitment, informed consent, and confidentiality. This article concerns the question of whether research can be conducted with high school students in conjunction with a mandatory drug-testing program, while adhering to prevailing ethical standards regarding human-subjects research and specifically the participation of children in research. (shrink)

Engaging Polanyi’s embeddedness–disembeddedness framework, this study explored the work experiences of Bhil children employed in Indian Bt cottonseed GPNs. The innovative visual technique of drawings followed by interviews was used. Migrant children, working under debt bondage, underwent greater exploitation and perennial and severe depersonalized bullying, indicative of commodification of labour and disembeddedness. In contrast, children working in their home villages were not under debt bondage and underwent less exploitation and occasional and mild depersonalized bullying, indicative of how civil society organizations, (...) along with the state, attempt to re-embed economic activities in the social context. Polanyi’s double movement was evident. ‘Place’ emerged as the pivotal factor determining children’s experiences. A ‘protective alliance’ of community controls and social power, associated with in-group affiliations and cohesive ties, stemming from a common village and tribal identity, aided children working at home for Bhil farmers. ‘Asymmetric intergroup inequality’ due to pronounced social identity and class differences, coupled with locational constraints and developmental disadvantage, made migrant children vulnerable targets. Social embeddedness influences how child workers are treated because it forces employers to be ethical and not engage in bullying. However, by shifting production to children’s home villages, there is an attempt to obscure the difference between child labour and child work. Thus, the seeds of disembeddedness are sown through the very act of re-embeddeding, potentially hampering future interventions. (shrink)