Health-related confidentiality and consent among minors: Data on adult perspectives from Belgium and The Netherlands

Health-related confidentiality and consent among minors: Data on adult perspectives from Belgium and The Netherlands
David De Coninck, Koen Matthijs. Peter de Winter, Jaan Toelen
Data in Brief, June 2022; 42
Open access
The data presented in this article provide one of the first large-scale insights on adult preferences for confidentiality and consent with regards to medical decision-making for minors. We collected data on these preferences through 12 hypothetical scenario’s that were presented, for which each participant had to indicate if they would (not) follow the minor’s preferences. Data regarding family communication, relationship quality, and sociodemographic characteristics were also collected. The data were collected through an online survey in September and October 2020, which yielded responses from 1000 Belgian and 1000 Dutch participants between 35 and 55 years of age. We selected this age range because it increased the chances that they had a child near the age of the fictional minor in the hypothetical cases. These data can be of interest for family researchers and/or health workers who want to explore adults’ perceptions regarding confidentiality and consent among minors.

Getting parental consent when treating children

Getting parental consent when treating children
Rupert Hoppenbrouwers
BDJ Team, 20 May 2022; 9 pp 20–21
When treating young children, it may be necessary to get the authority of someone with parental responsibility. With complex family relationships however, it might not be clear to dental professionals who has parental responsibility, and this can create a dilemma. Here we explain the principles and procedures around parental responsibility when treating younger children…

Editor’s note: BDJ Team is a product of the British Dental Association.

Living bioethics, theories and children’s consent to heart surgery

Living bioethics, theories and children’s consent to heart surgery
Research Article
Priscilla Alderson, Deborah Bowman, Joe Brierley, Nathalie Dedieu, Martin J Elliott, Jonathan Montgomery, Hugo Wellesley
Clinical Ethics, 7 April 2022
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.
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.
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.

Reconsidering Informed Consent for Trans-Identified Children, Adolescents, and Young Adults

Reconsidering Informed Consent for Trans-Identified Children, Adolescents, and Young Adults
Stephen B Levine, E Abbruzzese, Julia M Mason
Journal of Sex and Marital Therapy, 17 March 2022
In less than a decade, the western world has witnessed an unprecedented rise in the numbers of children and adolescents seeking gender transition. Despite the precedent of years of gender-affirmative care, the social, medical and surgical interventions are still based on very low-quality evidence. The many risks of these interventions, including medicalizing a temporary adolescent identity, have come into a clearer focus through an awareness of detransitioners. The risks of gender-affirmative care are ethically managed through a properly conducted informed consent process. Its elements deliberate sharing of the hoped for benefits, known risks and long-term outcomes, and alternative treatments must be delivered in a manner that promotes comprehension. The process is limited by: erroneous professional assumptions; poor quality of the initial evaluations; and inaccurate and incomplete information shared with patients and their parents. We discuss data on suicide and present the limitations of the Dutch studies that have been the basis for interventions. Beliefs about gender-affirmative care need to be separated from the established facts. A proper informed consent processes can both prepare parents and patients for the difficult choices that they must make and can ease professionals’ ethical tensions. Even when properly accomplished, however, some clinical circumstances exist that remain quite uncertain.

Children’s informed signified and voluntary consent to heart surgery: Professionals’ practical perspectives

Children’s informed signified and voluntary consent to heart surgery: Professionals’ practical perspectives
Empirical Paper
Priscilla Alderson, Hannah Bellsham-Revell, Joe Brierley, Nathalie Dedieu, Joanna Heath, Mae Johnson, Samantha Johnson, Alexia Katsatis, Romana Kazmi, Liz King, Rosa Mendizabal, Katy Sutcliffe, Judith Trowell
Nursing Ethics, 25 February 2022
Open Access
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, 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.
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.
Differing views about children’s competence to understand and consent are associated with emphases on consent as an intellectual, practical and/or emotional process.
“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.”

Tele-consent using mixed reality glasses (NREAL) in pediatric inguinal herniorrhaphy: a preliminary study

Tele-consent using mixed reality glasses (NREAL) in pediatric inguinal herniorrhaphy: a preliminary study
Won-Gun Yun, Joong Kee Youn, Dayoung Ko, Inhwa Yeom, Hyun-Jin Joo, Hyoun-Joong Kong, Hyun-Young Kim
Nature – Scientific Reports, 24 February 2022; 12(3105)
Open Access
There is an increasing demand and need for patients and caregivers to actively participate in the treatment process. However, when there are unexpected findings during pediatrics surgery, access restrictions in the operating room may lead to a lack of understanding of the medical condition, as the caregivers are forced to indirectly hear about it. To overcome this, we designed a tele-consent system that operates through a specially constructed mixed reality (MR) environment during surgery. We enrolled 11 patients with unilateral inguinal hernia and their caregivers among the patients undergoing laparoscopic inguinal herniorrhaphy between January through February 2021. The caregivers were informed of the intraoperative findings in real-time through MR glasses outside the operating room. After surgery, we conducted questionnaire surveys to evaluate the satisfaction and usefulness of tele-consent. We identified contralateral patent processus vaginalis in seven out of 11 patients, and then additionally performed surgery on the contralateral side with tele-consent from their caregivers. Most caregivers and surgeons answered positively about the satisfaction and usefulness of tele-consent. This study found that tele-consent with caregivers using MR glasses not only increased the satisfaction of caregivers and surgeons, but also helped to accommodate real-time findings by adapting surgical plan through the tele-consent.

Ages of Consent and Majority [BOOK CHAPTER]

Ages of Consent and Majority [BOOK CHAPTER]
Dana Lee Baker, Raquel Lisette Baker
Neuroethical Policy Design, 1 January 2022; pp 89-100 [Springer]
Most contemporary humans distinguish adulthood from childhood. Historical conceptions of these two states have varied across time and place. Understanding past approaches to majority takes in the reality that for much of human history, a large proportion of children did not survive until adulthood. Cultures around the world once created definite transitions into adulthood for children fortunate enough to survive childhood. Once the fragility of children weighed less heavily on the collective human consciousness, consideration of the distinction between child and adult became more nuanced. Many cultural traditions surrounding transition to adulthood remain in contemporary practice. However, as adult life became more complicated, access to adult privileges and assumption of adult responsibilities became more staggered. Furthermore, determining whether or not a particular individual has transitioned to adulthood became less clear and absolute in most contemporary societies.

Consent and parental responsibility – the past, the present and the future

Consent and parental responsibility – the past, the present and the future
Asma Keshtgar, Mohamed Hania, Mohammad O. Sharif
British Dental Journal, 28 January 2022; 232 pp 115 – 119
Open Access
Informed consent is the ‘permission or agreement’ given by the patient for a proposed action. This paper explores the clinician’s role in obtaining informed consent, provides an overview of consent and parental responsibility in the UK, and presents practical adjuncts to aid dental professionals in ascertaining who has parental responsibility to delineate persons capable of providing assent on behalf of an underage patient.
Consent and parental responsibility
While the principles of consent have largely stayed constant with time, subtleties in parental responsibility legislation exist in different regions of the UK. An audit exploring consent and parental responsibility knowledge among clinicians within the orthodontic department at the UCLH Eastman Dental Hospital demonstrated that none of the respondents met the gold standard (100%). The results ranged from 59-89% with a mean score of 74%. The majority of questions answered incorrectly related to knowledge of parental responsibility.
It is the responsibility of clinicians providing any care within the UK to stay up to date with legislation and regulations regarding consent and parental responsibility. Knowledge-based questionnaires can highlight areas of knowledge deficit which can be addressed through continuous professional development. This paper provides a flowchart summarising parental responsibility and a prefilled parental responsibility questionnaire as adjuncts to simplify the process of dental professionals ascertaining parental responsibility.

The proxy dilemma: Informed consent in paediatric clinical research – a case study of Thailand

The proxy dilemma: Informed consent in paediatric clinical research – a case study of Thailand
Sheila Varadan, Salin Sirinam, Kriengsak Limkittikul, Phaik Yeong Cheah
Developing World Bioethics, 24 January 2022
Informed consent is an essential requirement for the ethical conduct of research. It is also a necessary requirement for the lawful conduct of research. Informed consent provides a legal basis to enroll human subjects in clinical research. In paediatric research, where children do not generally enjoy a presumption of competence, a legal representative must authorise a child’s enrolment. Determining who should act on behalf of the child is a matter of law, rather than ethical principle. But, if national laws are lacking or do not reflect socio-cultural realities, legal uncertainty can arise, which can have implications for children’s enrolment in clinical research. Using Thailand as its case study, this paper contemplates how international legal frameworks, such as the UN Convention on the Rights of the Child, could be leveraged to navigate legal uncertainty in the informed consent process, enabling more children to access and participate in paediatric clinical research.

Preoperative Opioid Informed Consent and Prescribing Practices in Children Undergoing Orthopaedic Trauma Surgery

Preoperative Opioid Informed Consent and Prescribing Practices in Children Undergoing Orthopaedic Trauma Surgery
Brendan A. Williams, Lacey C. Magee, Christopher A. Makarewich, Ishaan Swarup, Lia W. McNeely, Apurva S. Shah
Journal of the American Academy of Orthopaedic Surgeons, 24 January 2022; 6(1)
Open Access
This study sought to examine prescribing practices for pediatric patients undergoing orthopaedic trauma surgery and assess the effect of state-mandated preoperative informed consent for opioids.
A retrospective single-institution cohort study was done between 2016 and 2018 for surgically managed isolated orthopaedic trauma with cohorting based on the presence of preoperative opioid consent. Analyses examined cohort demographic and procedural factors associated with the number of opioid doses prescribed.
A total of 1,793 patients met the study criteria. The proportion of patients prescribed opioids (P = 0.0378) and the number of doses (P < 0.001) were lower in consented patients. Differences were greater among those receiving solution (versus tablets). No cohort differences were observed in refill needs. Nonopioid medications prescribing increased. Multivariate analysis identified multiple factors, including preoperative opioid consent (P = 0.013) associated with fewer prescribed opioid doses.
After the implementation of preoperative opioid consenting, patients were prescribed fewer opioid doses after pediatric orthopaedic trauma surgery. The increased utilization of nonopioid therapies was also evident. These changes occurred despite a shorter length of hospital stay and without changes in the studied proxies of postoperative pain control. An increased awareness of opioid risks through formal consent discussion may help to facilitate reduced reliance on opioids for children in the postoperative period.