In this wide-ranging interview Priscilla Alderson discusses how she came to research parental and childhood consent and became a sociologist and how, late in her career, she became convenor of the critical realism group started by Roy Bhaskar at the Institute for Education in London. She discusses aspects of her seminal research over the years on multiple subjects, such as the rights of children, and reflects on what critical realism has added to her social research.

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory–practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members’ reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children’s interests and rights. Different approaches (...) to framing ethical questions are also considered. Being aware of the four theories’ influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children’s elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees’ influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors’ consent or refusal may be respected, with the support of clinical ethics committees. (shrink)

This paper briefly reviews highlights from decades of debates in medicine, law, bioethics, psychology and social research about children’s and parents’ views and consent to medical treatment and research. There appears to have been a rise and later a fall in respect for children’s views, illustrated among many examples by a recent book on the zone of parental discretion, which is reviewed. A return to greater respect for children’s views and consent is advocated.

Background: The law and literature about children’s consent generally assume that patients aged under-18 cannot consent until around 12 years, and cannot refuse recommended surgery. Children deemed pre-competent do not have automatic rights to information or to protection from unwanted interventions. However, the observed practitioners tend to inform young children s, respect their consent or refusal, and help them to “want” to have the surgery. Refusal of heart transplantation by 6-year-olds is accepted. Research question: What are possible reasons to explain (...) the differences between theories and practices about the ages when children begin to be informed about elective heart surgery, and when their consent or refusal begins to be respected? Research design, participants and context: Research methods included reviews of related healthcare, law and ethics literature; observations and conversations with staff and families in two London hospitals; audio-recorded semi-structured interviews with a purposive sample of 45 healthcare professionals and related experts; interviews and a survey with parents and children aged 6- to 15-years having elective surgery (not reported in this paper); meetings with an interdisciplinary advisory group; thematic analysis of qualitative data and co-authorship of papers with participants. Ethical considerations: Approval was granted by four research ethics committees/authorities. All interviewees gave their informed written consent. Findings: Interviewees explained their views and experiences about children’s ages of competence to understand and consent or refuse, analysed by their differing emphases on informed, signified or voluntary consent. Discussion: Differing views about children’s competence to understand and consent are associated with emphases on consent as an intellectual, practical and/or emotional process. Conclusion: Greater respect for children’s practical signified, emotional voluntary and intellectual informed consent can increase respectful understanding of children’s consent. Nurses play a vital part in children's practitioner-patient relationships and physical care and therefore in all three elements of consent. (shrink)

As a study involving diabetes care demonstrates, children sometimes have a much more sophisticated capacity for taking charge of their own health care decisions than is usually recognized in bioethics. Protecting these children from their disease means involving them in their treatment as much as possible, helping them to understand it and take responsibility for it so that they can navigate the multitude of daily decisions that become part of the diabetes medical regimen.

Neoliberalism, health and illness are all vast topics that range from global to local, personal to political. Critical realism offers valuable concepts, which help to extend and deepen analysis of...

Children's competence to refuse or consent to medical treatment or surgery tends to be discussed in terms of the child's ability or maturity. This paper argues that the social context also powerfully influences the child's capacity to consent. Inner attributes and external influences are discussed using an analogy of the genes and the stars.

Consent can only be voluntary, freely given and uncoerced. Can this legal adult standard also apply to children? High-risk surgery is seldom a wanted choice, but compared with the dangers of the un...

This article reviews practitioners’ evaluations of in-hospital ethics seminars. A qualitative study included 11 innovative in-hospital ethics seminars, preceded and followed by interviews with most participants. The settings were obstetric, neonatal and haematology units in a teaching hospital and a district general hospital in England. Fifty-six health service staff in obstetric, neonatal, haematology, and related community and management services participated; 12 attended two seminars, giving a total of 68 attendances and 59 follow-up evaluation interviews. The 11 seminars facilitated by an (...) ethicist addressed the key local concerns of staff about the social and ethical consequences of advances in genetics and their impact on professional policies and practice. Seminar agendas were drawn from prior interviews with 70 staff members. During evaluation interviews, participants commented on general aspects that they had enjoyed, how the sessions could be improved, timing, the mix of participants, the quality of the facilitation, whether sessions should be more challenging, after-effects of sessions, and interest in attending seminars and contacting the ethicist in future. Participants valued the increased interprofessional understanding and coherent discussion of many pressing issues that addressed important though seldom discussed ethical questions. The seminars worked well in the different hospitals and specialties. (shrink)

Equipoise is advocated as a means of achieving high scientific and ethical standards in randomised trials. As used in the context of research the word describes a state of uncertainty characterised by the belief that in a trial no arm is known to offer greater harm or benefit than any other arm. Clinicians who lack personal equipoise are advised to accept clinical or communal equipoise, based on current unresolved disagreement among the medical profession. Equipoise is mainly discussed in the literature (...) as an issue for senior doctors and research directors. Limitations of professional equipoise are reviewed, and data on the neglected topic of patients' equipoise are reported using the example of breast cancer trials. In theory, a patient who gives informed and voluntary consent to enter a randomised trial has achieved the equilibrium of equipoise. In practice, equipoise among patients ranges from personal to proxy acceptance. (shrink)

Children's autonomy includes, as far as possible, self-determination, bodily integrity and the right to influence outcomes. Limits to bodily integrity, which involves no touching without the child's consent or tacit agreement, are discussed. The clinical, legal and ethics literature tends to agree that children may give valid consent to major recommended treatment from around 12 years but may not refuse it until they are legal adults. Research shows that young children are more aware of their bodily integrity and autonomy, of (...) morality and decision making, than was assumed in the past. Adults therefore need to inform children and respect their initially instinctive efforts to protect their bodily integrity. Unlike assent, consent involves patients being adequately informed and being able to accept or refuse proposed treatment. Reasons are given for adults’ need to consult with children when determining their best interests. Beyond words, giving or withholding consent also involves emotions of fear, trust and courage, besides embodied reactions of cooperating with treatment or resisting it, in which young children actively engage. Some clinicians work with the informed cooperation of young children who need lifesaving treatment, and at times accept their refusal. Reasons for differences between mainstream experts’ views and clinical practices are considered. (shrink)

This is a brief reply to the roundtable entitled ‘Does critical realism need the concept of three domains of reality?’ in which Dave Elder-Vass, Tom Fryer, Ruth Porter Groff, Cristián Navarrete and...

Background This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children’s consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two (...) London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families’ informed consent to surgery. Results The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices. Conclusion We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children’s rights. (shrink)

A series of eight multidisciplinary conferences on consent to health care and research was held in London during the period 1992 to 1995. The aim was to present a rich and varied account of consent from the perspectives of academics (especially social scientists), practitioners, and people affected by personal experience. This report summarizes some of the main contributions.

The “family rule” paper by Dr Foreman proposes a way of resolving the present uncertainty about medical law on children's consent and refusal. This commentary reviews how doctors' decisions are already well protected by English law and respected by the courts. The “family rule” appears to be likely only to complicate the already diffuse law on parental consent, and to weaken further the competent minor's position in cases of uncertainty and disagreement. It leaves the difficult questions about defining and assessing (...) children's competence unanswered. This commentary suggests that these questions would be better resolved through professionally determined standards of good practice that respect children and parents, rather than through rules or laws. (shrink)

This discussion paper is drawn from a qualitative research project comparing the effect of special and ordinary schools on the lives of children, young people and their families. Special schools are recommended by health professionals who seldom know how ineffective these schools are. We question the beneficence and justice of health professionals' advice on education for children with disabilities and other difficulties. Cooperation with local education authorities (LEAs) plays a considerable part in the work of community paediatricians, clinical medical officers, (...) therapists and other health professionals encountering children with "special needs". The "needs" range from physical disability and sensory impairment to learning difficulties and emotional or behavioural difficulties. This cooperation involves routine administrative problems, but it raises broad ethical issues too, particularly in respect of current tendencies in state schooling towards the integration or inclusion of these children in mainstream schools and classes. (shrink)

This paper suggests that medical ethics is often based on assumptions, commonly shared in modern medicine, which can cause problems and which need to be questioned. Two contrasting yet complementary ways of thinking about ethical dilemmas in neonatal care are described as the 'separation' and the 'attachment' approaches. The contribution of medical ethics to the substance and quality of discussions between doctors and parents is considered.

The views of parents and staff about physical and symbolic space and its effects on ethical clinical practice are reported. Researchers observed four neonatal intensive care units (NICUs) in southern England, and interviewed 40 senior staff and the parents of 80 babies. The adults' concerns include: how space affects the sharing of information and responsibility for the babies; respect and welcoming policies; access, freedom of movement and accessibility of staff; family friendly space and privacy; aesthetic values; and 'baby-led' space. The (...) paper concludes that abstract principles of respect for autonomy and attitudes towards the baby's biological and personal space take on practical embodied meanings in clinical spaces and practices. NICU design and aesthetics convey powerful ethical messages of welcome or exclusion that endorse or undermine partnerships between staff and parents. Helping premature and impaired babies to reach their space at the centre of their family involves sensitive management. (shrink)