Minor Consent Research Articles

A survey of the legal frameworks on medical decision-making in minors in European countries.

This study examines how healthcare decisions involving minors are handled across European countries by asking member organizations of the European Academy of Paediatrics (EAP).An online survey was distributed via the EAP network to representatives of national paediatric associations in all European countries. The survey focused on determining the age at which minors can consent to medical treatment without parental permission, including contexts such as mental health treatment, reproductive health, vaccinations, life-threatening situations, and end-of-life decisions. Responses were collected, analysed, and validated through follow-up checks with the respondents. We received 62 responses from 43 countries. The minimum age at which minors can consent to medical treatment varies substantially across Europe, ranging from sixteen or eighteen years in some countries to being based on the child's maturity in others. Additionally, there are disparities in the age of consent across specific contexts; for example, end-of-life decisions for minors are prohibited in several countries.Conclusions: In 2024, substantial differences persist in the legal age at which minors can make healthcare decisions across Europe. These findings are pertinent for policymakers and healthcare providers aiming to develop regulations that uphold the rights of young people while ensuring ethical, patient-centered care in a diverse continent but with easy movement and migration across internal borders. Future research should investigate how European health systems adapt to changes in healthcare requirements as a child grows and matures, and the impact of EU policies on paediatric healthcare services. What is Known? • Prior research has established that the age at which minors can consent to medical treatment varies internationally. •Across European countries, legal ages for minor consent to medical treatment continue to show substantial variance, reflecting differing national policies and cultural attitudes towards the autonomy of young individuals. What is New? •This study uniquely highlights that not only does the age of consent differ across countries. • The age of consent varies across different medical contexts, such as mental health, reproductive health, and end-of-life decisions.

Participation of Minors in Operational Search Relations

Statistics on juvenile delinquency indicate that over the past decade, the level of serious and especially serious crimes committed by these individuals has remained relatively stable. In such a situation, the important tasks of law enforcement agencies are the timely detection and suppression of crimes committed by minors and their removal from the criminal environment through individual prevention. Effective solution of these tasks is impossible without the implementation of operational investigative activities. In this regard, a study was carried out regarding participation of minors in operational search relations in two main roles: as persons providing assistance to subjects of operational search activities and as objects of operational search activities. Within the framework of the first direction, legislative regulation of the conditions for the provision of assistance to minors is proposed: written consent of legal representatives and minors themselves, if they have not reached the age of 16; ensuring the safety of minors by employees of the operational unit; the introduction of additional safeguards for the assistance of minors. Within the framework of the second direction, proposals have been prepared concerning the conditions for conducting operational investigative measures against persons under the age of criminal responsibility. The issue of the need to involve legal representatives and teachers in conducting a public survey of minors was also raised for academic and practical discussion.

Exploring gender identity in paediatric dermatology.

This ethical dilemma explores gender identity within the paediatric population. It also considers the fundamental principles of consent for minors, with non-maleficence as an overarching framework to safeguard children.

Navigating equity in global access to genome therapy expanding access to potentially transformative therapies and benefiting those in need requires global policy changes.

In December 2023, the US Food and Drug Administration and the UK Medicines and Healthcare Products Regulatory Agency granted the first regulatory approval for genome therapy for sickle cell disease. This approval brings hope to those suffering from this debilitating genetic disease. However, several barriers may hinder global patient access, including high treatment costs, obtaining informed consent for minors, inadequate public health infrastructure, and insufficient regulatory oversight. These barriers reflect the structural inequalities inherent in global health governance, where patient access often depends on social and institutional arrangements. This article addresses concerns around informed consent, treatment costs, and patient access, and proposes corresponding policy reforms. We argue that these discussions should be framed within a broader global context that considers social and institutional structures, global research priorities, and a commitment to health equity.

Factors Affecting COVID-19 Vaccine Decision-Making and Satisfaction: A Survey of U.S. High School Students

PurposeTo investigate self-reported individual-, household-, and community-level factors impacting COVID-19 vaccination decision-making among a sample of high school-aged US adolescents. MethodsWe surveyed adolescents ages 15-17 living in the United States during September and October 2022 (n = 454). Univariable and targeted bivariable and multivariable analyses were conducted to examine associations between adolescent characteristics and COVID-19 vaccination status, satisfaction with vaccination status, reasons weighed for and against vaccination, and experience of perceived access barriers. ResultsMore than three-quarters of high school-aged adolescents in our sample reported satisfaction with their current COVID-19 vaccination status, and respondents were more likely to report satisfaction with their COVID-19 vaccination status when they reported actively participating in the decision. DiscussionAdolescents remain an important age group for targeted public health and policy interventions given that their vaccination rates still lag behind averages for adults. Allowing for minor consent to vaccination, as well as parent-, school-, or peer-based interventions, may prove especially effective for addressing rates among high school-aged students.

Comparative study on informed consent regulation in health care among Italy, France, United Kingdom, Nordic Countries, Germany, and Spain

The information and subsequent expression of will, so-called informed consent, have become the essential element of health right, understood as the right to autonomous choice in health, based on the fiduciary relationship between physician and patient. This gradually leads European Countries to adopt special legislations and to issue frequent judgments on the subject. However, new challenges in daily clinical practice call for further study of legal solutions. The authors analyse and compare the regulations on informed consent in health care of Italy, France, the United Kingdom, the Nordic Countries, Germany, and Spain. The health and legal contexts, existence of special regulations on informed consent and their characteristics are discussed. Informed consent resulted a mandatory requirement. Clear communication about treatment, therapeutic alternatives, and major risks, discussed in conversation, but preferably documented in writing, are agreed upon. The possibility of dissent and withdrawal of consent are also included. There is a growing interest in involving and regulating the entire health team in information and consent. Lowering the age of consent for minors or analysing the maturity of minors are attempts to increase their participation in health decisions. On another side, the protection of adult incapables persons requires greater involvement of family and fiduciaries to better adapt to changing health needs. Health policy must take responsibility for training health professionals and citizens about the value of health information and communication as a shared choice in care planning, to strengthen the bond of trust with the healthcare system and users.

Minor Consent for Vaccination: Ethically Justified, Politically Fraught.

Policies allowing some minors to consent to receive recommended vaccines are ethically defensible. However, a policy change at the federal level expanding minor consent for vaccinations nationwide risks triggering a political backlash. Such a move may be perceived as infringing on the rights of parents to make decisions about their children's health care. In the current post-COVID environment of heightened anti-vaccination activism, changes to minor consent laws may be unadvisable, and policy makers should proceed with caution.

Quo Vadis the Status of Transgender People in Slovakia?

On 29th September 2023, the Comenius University Bratislava hosted a scientific conference entitled "Quo Vadis the Status of Transgender People in Slovakia?" It was organized by the research team of the project VEGA 1/0350/21, which focuses on the ethical and legal aspects related to the informed consent of transgender minors. The project team is based at the Faculty of Law of Comenius University in Bratislava. The primary aim of the conference was to start a substantial discussion about the ethical, medical, and legal principles for care for transgender and non-binary adolescents in the Slovak Republic. For this purpose, experts from the fields of psychiatry, psychology, endocrinology, law, philosophy, and ethics were invited. An integral part of the conference was the lecture and attendance of transgender people and non-binary people in a discussion panel. The principle of self-determination was confirmed to be fundamental for the further development of legal framework and medical services in Slovakia.

Assessing Facilitator Fidelity to Principles of Public Deliberation: Tutorial.

Public deliberation, or deliberative democracy, is a method used to elicit informed perspectives and justifiable solutions to ethically fraught or contentious issues that affect multiple stakeholder groups with conflicting interests. Deliberative events bring together stakeholders (deliberants) who are provided with empirical evidence on the central issue or concern and then asked to discuss the evidence, consider the issue from a societal perspective, and collectively work toward a justifiable resolution. There is increasing interest in this method, which warrants clear guidance for evaluating the quality of its use in research. Most of the existing literature on measuring deliberation quality emphasizes the quality of deliberants' inputs (eg, engagement and evidence of compromise) during deliberative sessions. Fewer researchers have framed quality in terms of facilitator inputs, and these researchers tend to examine inputs that are consistent with generic group processes. The theory, process, and purpose of public deliberation, however, are distinct from those of focus groups or other group-based discussions and warrant a mechanism for measuring quality in terms of facilitator fidelity to the principles and processes of deliberative democracy. In our public deliberation on ethical conflicts in minor consent for biomedical HIV prevention research, we assessed facilitator fidelity to these principles and processes because we believe that such assessments serve as a component of a comprehensive evaluation of overall deliberation quality. We examined verbatim facilitator remarks in the deliberation transcripts and determined whether they aligned with the 6 principles of public deliberation: equal participation, respect for the opinions of others, adoption of a societal perspective, reasoned justification of ideas, expression of diverse opinions, and compromise or movement toward consensus. In this tutorial, we describe the development of a blueprint to guide researchers in assessing facilitator fidelity, share 3 templates that will assist them in the task, and describe the results of our assessment of facilitator fidelity in 1 of the 4 sites in which we conducted deliberations.

Genomic Landscape of Epstein-Barr Virus in Endemic Burkitt Lymphoma

Introduction: Endemic Burkitt lymphoma (eBL) is a fast-growing B-cell malignancy strongly linked to Epstein-Barr virus (EBV) infection, a member of the herpes virus family. The virus is widespread, infecting 95% of the global population, and has also been linked to several other cancers, including nasopharyngeal carcinoma (NPC), diffuse large B-cell lymphoma (DLBCL), Hodgkin lymphoma (HL), natural killer T-cell lymphoma (NKTCL), gastric carcinoma (GC) and leiomyosarcomas. The distribution of these cancers is inconsistent in different regions, raising the hypothesis of whether different strains are linked to specific cancers. Using high throughput sequencing, we obtained EBV whole genome sequences from the plasma of children with eBL diagnosis from a large cohort study in East Africa. Methods: Twenty-one EBV-positive patients (Sixteen BL, one diffuse large B-cell lymphoma, one lymphoblastoid lymphoma, one clear cell sarcoma, one small blue cell tumour and one alveolar rhabdomyosarcoma) were recruited from St Mary's Hospital Lacor, in Uganda, between 2020 and 2023. Venous blood samples were collected in appropriate DNA tubes, and ~ 5 ml of plasma was used for cfDNA extraction using QIAamp circulating Nucleic acid kit (Qiagen, USA). The cfDNA libraries were prepared using the Thruplex Tag- Seq kit (Takara Bio Inc. Japan), target capture and enrichment was performed using an EBV-custom panel (IDT Inc. USA) before sequencing. The Illumina fastq files were processed using an in-house pipeline, and paired-end reads were aligned to a bespoke hybrid EBV reference genome (NC_007605.1 and EBNA genes from NC_009334) using BWA with an alt-ware method. The average sequencing depth and EBV genome coverage were 5164 and 97.8%, respectively. Following the GATK best practice workflows (version 4.0), 15,318 variants were called across all samples using Varscan and Vardict after base and variant recalibration. Functional annotation was performed using the SNPEff package (v5.1d) according to the reference genome (NC_007605.1, NCBI annotation, Nov 2013). For the phylogenetic analysis, 322 public EBV genomes were downloaded from the GenBank and aligned with 21 EBV genomes from the current study using a multiple sequence alignment program (MAFFT v7.52), and the maximum likelihood of the phylogenetic relationship was inferred using RAxML (v8.0), assuming a general time reversible (GTR) model. The inferred phylogeny was subsequently rooted using the evolutionary placement (EPA) algorithm from RAxML using a Macacine herpesvirus 4 genome sequence (NC_006146) as an outer group. The tree was annotated using FigTree software (v1.4.4). The study was approved by the Oxford Tropical Research Ethics Committee (OxTREC Ref: 15-19), National Institute of Medical Research (NIMR/HQ/R.8a/Vol.IX/3408), Uganda National Council of Science and Technology (Ref: HS529ES), and St Mary's Hospital Lacor Institutional Research Ethics Committee. Participants provided written informed consent and assent for minors. Results: We examined the genomes of 21 EBV samples, including 18 type-1 and 3 type-2 strains. Our analysis revealed an average of 729 mutations per sample, comprised of 707 SNVs and 26 indels (<50bp) per sample (Figure 1). Within 16 eBL tumours, we observed the 30-bp deletion in LMP-1 in 43.8% (7/16) cases. This deletion has been previously reported in NPC in Southeast Asia and is associated with high oncogenic potential and weak immunogenicity. We also identified a novel frameshift variant (15-bp deletion) in LMP-1 in 66.7% (14/21) of tumour samples. The LMP-1 gene encodes a 356-amino acid polypeptide with a cytoplasmic amino terminus, a transmembrane domain, and a cytoplasmic carboxy terminus. The C-terminus interacts with cellular proteins, activating the transcriptional nuclear factor-kB (NF-kB) pathway associated with antiapoptotic cell signalling. Additionally, we observed a high degree of polymorphism in EBNA-1, EBNA3s, LMP-2A, BALF1, and BOLF-1 viral genes. Our phylogenetic analysis revealed distinct clustering of African EBV genomes compared to Asian strains and NPC versus eBL (Figure 2). Conclusions: Overall, our study provides the first-ever comprehensive mutational profile of EBV in eBL clinical samples, offering valuable insights into the somatic events of EBV in tumour biology.

Multilevel perspectives on school-based opportunities to improve HPV vaccination among medically underserved adolescents: Beyond school entry mandates

ABSTRACT School-based HPV vaccination programs have improved vaccine uptake among adolescents globally. However, school-based HPV vaccination strategies in the United States (US) have mainly focused on school-entry mandates for vaccination, which have passed in only five states/jurisdictions. Many schools and school-based health centers (SBHCs) already provide health services to medically underserved adolescents and opportunities to improve disparities in HPV vaccine education and uptake are underexplored. This qualitative study of clinic and community members assessed potential opportunities within and outside schools to increase HPV vaccination. Data were generated from a larger mixed-methods study designed to understand experiences with HPV vaccination evidence-based strategies in medically underserved communities. The parent study included interviews and focus groups conducted with clinic (providers, clinic leaders, staff) and community (racial/ethnic minority parents, advocates, payers, policy representatives) members in Los Angeles and New Jersey between December 2020-January 2022. We created a reduced dataset of text related to schools/SBHCs (30 in-depth interviews, 7 focus groups) and conducted a directed content analysis. Participants indicated that schools and SBHCs are ideal venues for reaching medically underserved adolescents experiencing barriers to primary care access. Parents/providers expressed mutual interest in HPV vaccine administration/education in schools, but some advocates/policy participants experienced challenges due to increasing politicization of vaccines. Participants highlighted policies for expanding HPV vaccine education and administration in schools, including minor consent and increasing SBHC funding for HPV vaccines. More research is needed to explore existing infrastructure, partner motivation, and opportunities to improve HPV vaccination among medically underserved adolescents within schools beyond vaccine mandates.

Independent adolescent consent to mental health care: an ethical perspective

ABSTRACT Despite a growing need for mental health services for adolescents, treatment access among adolescents remains poor. Psychologists practicing in the United States are subject to highly variable legal standards for consent and confidentiality of minor clients, which can further suppress treatment accessibility. States permit independent consent for minors according to a wide range of criteria, but whether these criteria are empirically derived remains unknown. Inconsistencies between the law and ethical obligations for psychologists can expose minor clients to harm and force psychologists to make disclosures that violate patients’ rights and ethical standards. These harms may be particularly severe for clients from vulnerable populations such as sexuality and gender diverse youth (SGDY). To prevent ethical dilemmas, psychologists and professional organizations should work toward an empirical understanding of the adolescent capacity to consent to mental health care and use that understanding to promote uniform consent and confidentiality standards.

94. Implementing Online Public Deliberations on Minor Consent for Biomedical HIV Prevention Research in Diverse Cities

94. Implementing Online Public Deliberations on Minor Consent for Biomedical HIV Prevention Research in Diverse Cities

Minor Consent Laws for Sexually Transmitted Infection and Human Immunodeficiency Virus Services in the United States: A Comprehensive, Longitudinal Survey of US State Laws.

Objectives. To assess changes in minor consent laws for sexually transmitted infection (STI) and HIV testing, treatment, and prevention services in all 50 US states and the District of Columbia from 1900 to 2021. Methods. We coded laws into minor consent for (1) health care generally; (2) STI testing, treatment, and prevention; (3) HIV testing, treatment, and prevention; and (4) pre- or postexposure prophylaxis for HIV prevention. We also coded confidentiality protections and required conditions (e.g., threshold clinician judgments). Results. The largest increase in states allowing minors to consent to STI services occurred during the 1960s and 1970s. By 2021, minors could consent independently to STI and HIV testing and treatment in all 50 states plus DC, STI prevention services in 32 jurisdictions, and HIV prevention services in 33 jurisdictions. Confidentiality protections for minors are rare. Prerequisites are common. Conclusions. Although the number of states allowing minors to consent independently to STI and HIV services has increased considerably, these laws have substantial limitations, including high complexity, prerequisites requiring clinician judgments, and neglect of confidentiality concerns. (Am J Public Health. 2023;113(4):397-407. https://doi.org/10.2105/AJPH.2022.307199).

All-Cause Mortality in Reproductive-Aged Females by State: An Analysis of the Effects of Abortion Legislation

ABSTRACT It is estimated that the Supreme Court decision in Dobbs v Jackson Women's Health Organization will leave approximately 33 million US women in states without available abortion services. Even before this decision, there was wide variation in abortion access across the United States. In 2019, 43% of reproductive-age women lived in states with policies overall restrictive to abortion because of the 26 abortion bans that had been enacted, with many more introduced. In contrast, other states have passed laws supportive of and protective of abortion. Many laws restricting abortion were supposedly aimed at protecting women's health by regulating abortion facilities as ambulatory surgery centers, dictating the types of health care providers who can perform abortion, and requiring admitting privileges to hospitals for clinicians providing abortion care. Opponents of these regulations assert that they are designed to restrict access without evidence that they decrease risks associated with abortion. These laws purporting to protect women with safer abortions have actually done the opposite; restricted abortion access results in increased pregnancy-related deaths. The focus of abortion regulations and restrictions is also aimed at protecting the fetus (and subsequent neonate), but prior studies have demonstrated an association between restricted access to abortion and increased infant mortality. Moreover, prior studies demonstrated that abortion restrictions increase maternal and infant mortality. The aim of this retrospective cohort study was to evaluate the association between state-level abortion legislation and all-cause mortality among females of reproductive age and maternal, fetal, and infant mortality. This study compared mortality rates in states categorized as supportive, moderate, and restrictive with regard to their laws. The Centers for Disease Control and Prevention's WONDER (Wide-ranging ONline Data for Epidemiologic Research) database was used. The association between supportive, moderate, and restrictive state abortion regulations and all-cause mortality in reproductive-age females was estimated using generalized estimating equations. The primary study outcome was all-cause mortality in reproductive-age females (aged 15–49 years). Issues examined included specific, common legal restrictions placed on abortion, including in-person counseling, restrictions on insurance coverage, waiting periods, requiring inaccurate or misleading counseling to pregnant women (such as information on medical abortion reversal or fetal personhood), prohibiting telemedicine for medication abortion, and requiring parental consent for minors. Secondary outcomes included maternal mortality, fetal mortality, and infant mortality. All-cause mortality in reproductive-age females was defined as death at a reported age of 15 to 49 years. Compared with restrictive states, moderate and supportive states were not associated with a significant decrease in all-cause mortality, and maternal mortality (per 100,000 live births) was significantly lower in moderate (25.79; 95% confidence interval [CI], 29.88–21.70), but not supportive states (22.51; 95% CI, 26.75–1.72). In both moderate (20.56; 95% CI, 21.09–20.04) and supportive (21.10; 95% CI, 21.56–20.64) states, infant mortality (per 1000 live births) was significantly lower. In moderate states, fetal mortality was significantly lower (20.69; 95% CI, 21.18–20.20) but not in supportive states (20.64; 95% CI, 21.14–0.13). With each additional abortion regulation, there was an increase in both maternal mortality (1.09; 95% CI, 0.36–1.82) and infant mortality (0.20; 95% CI, 0.12–0.26). These findings show that compared with restrictive laws, moderate state abortion legislation is associated with lower rates of maternal, fetal, and infant mortality but not lower all-cause mortality in reproductive-age females. Restrictive laws enacted with the purported intent of protecting women's health and fetal health by regulating abortion fail to do so and do not decrease all-cause mortality in reproductive-age women or maternal mortality. Repealing certain types of laws may decrease all-cause mortality in reproductive-age females, maternal mortality, and infant mortality. Allowing an abortion at any gestational age does not substantially increase fetal death rates compared with states that restricted termination after a certain gestational age.

Interdisciplinary Aspects of the Status of Transgender People in Society

On 22 September 2022, the Comenius University Bratislava hosted an international scientific conference entitled "Interdisciplinary Aspects of the Status of Transgender People in Society" that was organised by the research team of the grant project VEGA 1/0350/21, which focuses on the ethical and legal aspects related to the informed consent of transgender minors. The project team, led by Professor Ľubomír Batka, is based at the Faculty of Law of the Comenius University Bratislava. The conference itself was held in the renovated premises of the Infocentre of Comenius University on Štúrova Street in Bratislava, which provided the organisers, participants and members of the public with a pleasant and comfortable venue for this scientific event. The primary aim of the conference was to organise a substantial discussion on the status of transgender people in society with the potential to identify shortcomings in the current legislation (not only) of the Slovak Republic. For this purpose, a number of experts dealing with the issue from diverse scientific fields (not only law, but also psychiatry, psychology, sociology, philosophy or theology) were invited in order to truly present the complex and interdisciplinary position of transgender people in our society.

Opportunities to Improve Adolescent Sexual and Reproductive Health Services in Primary Care Clinics.

Primary care providers are well positioned to address the sexual and reproductive health (SRH) needs of adolescents; however, gaps often exist in the delivery of quality SRH services in primary care. Our objective was to identify specific opportunities to improve the delivery of adolescent SRH services in primary care. We conducted in-depth interviews with 25 primary care providers from various disciplines across rural and urban areas of Minnesota and conducted thematic analysis of transcribed data. Participants identified salient opportunities in three areas: (1) training and resources for providers (e.g., related to minor consent laws or addressing sensitive subjects), (2) practices and procedures (e.g., time-alone procedures and policies for confidential screening and sharing test results), and (3) education for adolescents (e.g., knowing their rights and accessing confidential SRH services). Study findings provide actionable opportunities to improve delivery of adolescent SRH services in primary care.

Un mineur peut-il consentir à un parcours de transition médicale?

As hundreds of so-called transgender children and teenagers enter “medical transition” processes with serious consequences, the relevance of the application of the rules of the Public Health Code relating to patient information and consent must be questioned : to what extent are these young minors capable of understanding the information provided and giving free and informed consent to these programmes?The medical controversies that have arisen concerning the consequences of the medical transition processes, the experimental nature of which has been pointed out, raise serious doubts about the quality, reliability and fairness of the information given. Furthermore, is the complexity of the information communicated to minors who have no life experience, the eagerness of young patients, the influence of social networks, and the censure attached to possible therapeutic alternatives compatible with the capacity to give free and informed consent?Finally, if it is not a question of treating a pathology but of “concretising the right to self-determination”, can we still claim the application of rules specific to the medical field? If there is no medical necessity or very serious medical reason, is it legitimate to accede to a minor's request to irreversibly damage his or her body?In the UK, a thousand families are reportedly preparing to take legal action for medical negligence, alleging that their vulnerable children have been misdiagnosed and placed on a damaging medical transition course. Yet these minors had been found to be ‘consenting’.It is time to weigh up the relevance of the sacredness of the minor's consent.

Minor Consent Laws for Sexually Transmitted Infection and HIV Services

This study examines current minor consent laws for sexually transmitted infection/HIV services and related confidentiality protections in all 50 states and the District of Columbia.

From Human Papillomavirus to COVID-19: Adolescent Autonomy and Minor Consent for Vaccines

Adolescent minors in every state can give their own consent for some health care. Although parent consent is generally required for vaccination, there are exceptions in some states. Completion rates are low for recommended adolescent vaccines; allowing adolescents to consent may improve coverage, although more study is needed on barriers to vaccine completion and the feasibility of changes in consent laws. The COVID-19 pandemic highlights the importance of vaccines and related challenges. This policy brief reviews laws governing adolescent consent for health care, including vaccines, and recommends advocacy to support increased adolescent access to vaccines and improved public health.