Parents' perceptions of parental consent procedures for social science research in the school context.

Typically, parents or other legal guardians are asked for an active declaration that the participation of their child in scientific research is informed and voluntary. However, asking for active parental consent leads to lower quality studies and passive parental consent might be preferable. In this study, we used an online survey in which parents (N = 156) watched video vignettes of multiple types of research in the classroom and asked them to rate the appropriateness of using active and passive parental consent. The results indicated that parents perceived active consent procedures as more appropriate in most types of research. However, particularly for secondary school children passive consent was rated as comparably appropriate for several types of research (e.g. observation and questionnaire studies). Other aspects of providing consent are displayed in a supplementary online dashboard. We conclude with recommendations for parental consent procedures for social science research in the school context.

Adolescent Self-Consent for the HPV Vaccine and the Effects on Vaccine Rates.

The adolescent development age is the period between 10 and 19 years when a child becomes a young adult and learns to make important health decisions independently. Adolescents consenting to receive a vaccine without parental or legal guardian consent is adolescent self-consent. Adolescent self-consent for the human papillomavirus (HPV) vaccine is a health policy issue that could increase vaccine uptake rates. Adolescent self-consent for the vaccine may increase adolescents' autonomy with their healthcare decisions. Pediatric advanced practice nurses and other healthcare providers should advocate for adolescents and encourage parents to allow adolescents to be more active regarding the HPV vaccine.

Decision Style Inventory Application in Parent/Guardian Vaccination Decision-Making: A Pilot Study.

INTRODUCTION: Cases of preventable diseases continue to occur globally. Much literature is present about barriers and factors that influence vaccination, but little is known about psychologically ingrained decision-making styles and their relationship with vaccination decisions. DESIGN/METHODS: This quantitative descriptive cross-sectional pilot study aimed to explore using an established tool, the Decision Style Inventory (Rowe & Mason, 1987), in parents/guardians of children 2 months to 20 years old. RESULTS: Nineteen parents/guardians participated in this study and provided positive feedback on the Decision Style Inventory (Rowe & Mason, 1987). Descriptive statistics revealed vaccination decisions occurred more frequently with certain decision styles. CONCLUSIONS: Further research examining associations between decision styles and vaccination decisions is warranted. The findings of such research could lead to new tool development that integrates external factors and parental decision-making style. This new tool could allow healthcare providers to select targeted interventions that holistically address parental vaccination decisions.

Improving contraceptive care for minors in Israel: practice, policy, and training gaps among OBGYNs.

BACKGROUND: Sexually active adolescents sometimes seek contraceptives without parental consent, posing challenges due to minors' confidentiality and consent regulations. This is especially the case under the un-nuanced Israeli legal scheme regarding adolescents' care. METHODS: Israeli OBGYNs were contacted through mailing lists and social media groups and asked to fill an online questionnaire regarding their experience and protocols concerning prescription of contraceptives to minors. They were also asked about their comprehension of the relevant legal obligations, the importance they ascribe to different ethical interests and considerations, as well as their training. RESULTS: Of the 177 responding gynecologists, 132 (74.58%) consulted minors about contraceptives during the past year, regardless of a vast lack of training on providing care to minors. More than a third of respondents believed that there is no legal requirement to involve parents in the process, and only 8% assumed a legal obligation for parental involvement in all minors under the age of 18. Three quarters would "almost always" prescribe contraceptives without parental knowledge, if requested, while 20% never would. No correlation was found between respondents' practices and their perception of the relevant legal obligations. Participants agreed that the risk to the health of the minor as a result of having sex without contraceptives is of utmost importance. Yet, those willing to prescribe gave greater weight to this consideration, while those who do not prescribe were more concerned with the legal ramifications of such an act. The majority identified the age of 15 as the threshold for consistently prescribing contraceptives to minors without parental involvement. CONCLUSION: This study highlights the significant gaps in both the legal framework and the training of Israeli OBGYNs, and further supports confidential prescription of contraceptives to minors 15 years and older, via Article 6 of the Israeli Legal Competence and Guardianship Law. Legislative reform, professional guidelines and education and training programs are all needed to ensure consistent and legally sound practices, that safeguard the health and rights of minors. It is imperative to guide healthcare providers, including OBGYNs prescribing contraceptives to minors, on managing the care of minors refusing parental involvement, clarifying the legal framework and ethical considerations involved.

Obtaining Consent for Research on Risky Behaviours Among Adolescents in Canada: A Scoping Review.

This scoping review explores current practices for obtaining consent in research on risky behaviours among adolescents in Canada. The JBI methodology for scoping reviews was used. The database search was conducted in August 2021 and updated in November 2022. Papers published in 2010 or later were included. Extracted data included study characteristics, sample characteristics, and consent procedures. The review included 83 reports covering 57 studies. Nearly 60% of studies relied on adolescent self-consent for participation. Adolescent self-consent was more common than parental/guardian consent for studies using in-person research methods, older adolescent groups, and particularly vulnerable populations. Parental/guardian consent was more common for studies using younger age groups and general population samples. Adolescent self-consent was more common than parental/guardian consent for most risky behaviours covered by this review. These results provide insight into current consent practices in this area and offer guidance to researchers and institutional review boards in Canada.

Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review.

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.

Parental request for familial carrier testing in early childhood: The genetic counseling perspective.

Professional guidelines generally caution against carrier testing in minors, though prior research indicates parents request and providers sometimes facilitate testing for unaffected siblings of a child affected by a genetic disorder. We investigated the perspectives of genetic counselors in North America regarding carrier testing prior to adolescence. Practicing genetic counselors (n = 177) responded to an electronic survey assessing their willingness to facilitate testing in four hypothetical scenarios and their evaluation of parental motivations. Participants did not find parental arguments for testing persuasive, and most were unwilling to facilitate carrier testing in children. A significant interaction effect indicated the presence of nonactionable carrier-associated health risks in adulthood made participants significantly less hesitant when the mode of inheritance was X-linked. Participants considered parental motivations that center the child's interests as significantly more persuasive. This study suggests genetic counselors are resistant to carrier testing for familial disorders in young children and tend to align with current guidelines, yet they recognize nuance in various cases. Further investigation into this topic is warranted to support genetic counselors facing these requests as the ethics of pediatric carrier testing continues to be debated.

Gillick competence: an inadequate guide to the ethics of involving adolescents in decision-making.

Developmentally, adolescence sits in transition between childhood and adulthood. Involving adolescents in their medical decision-making prompts important and complex ethical questions. Originating in the UK, the concept of Gillick competence is a dominant framework for navigating adolescent medical decision-making from legal, ethical and clinical perspectives and is commonly treated as comprehensive. In this paper, we argue that its utility is far more limited, and hence over-reliance on Gillick risks undermining rather than promoting ethically appropriate adolescent involvement. We demonstrate that Gillick only provides guidance in the limited range of cases where legal decisional authority needs to be clarified. The range of cases where use of Gillick actually promotes adolescent involvement is narrower still, because several features must be present for Gillick to be enacted. Each of these features can, and do, act as barriers to adolescent involvement. Within these limited situations, we argue that Gillick is not specific or strong enough and is reliant on ethically contestable principles. Moreover, in most situations in adolescent healthcare, Gillick is silent on the ethical questions around involving adolescents. This is because it focuses on decisional authority-having the final say in decision-making-which is one small subset of the many ways adolescents could be involved in decision-making. The implication of our analysis is that use of Gillick competence tends to limit or undermine adolescent involvement opportunities. We propose that those working with adolescents should be judicious in seeking Gillick's guidance, instead drawing on and developing alternative frameworks that provide a comprehensive model for adolescent involvement.

As low as reasonably practicable (ALARP): a moral model for clinical risk management in the setting of technology dependence.

Children dependent on life-prolonging medical technology are often subject to a constant background risk of sudden death or catastrophic complications. Such children can be cared for in hospital, in an intensive care environment with highly trained nurses and doctors able to deliver specialised, life-saving care immediately. However, remaining in hospital, when life expectancy is limited, can considered to be a harm in of itself. Discharge home offers the possibility for an improved quality of life for the child and their family but comes with significant medical risks.When making decisions for children, two ethical models predominate, the promotion of the child's best interests or the avoidance of harm. However, in some circumstances, particularly for children with life-limiting and/or life-threatening illness, all options may be associated with risk. There are no good options, only potentially harmful choices.In this paper, we explore decisions made by one family in such circumstances. We describe a model adopted from risk management programmes beyond medicine, which offers a potential framework for identifying risks to the child that are morally permissible. Some risks and harms to a child, not ordinarily permitted, may be acceptable when undertaken in the pursuit of a specified desired good, so long as they are as low as reasonably practicable.

No consent for brain death testing.

The overwhelming weight of legal authority in the USA and Canada holds that consent is not required for brain death testing. The situation in England and Wales is similar but different. While clinicians in England and Wales may have a prima facie duty to obtain consent, lack of consent has not barred testing. In three recent cases where consent for brain death testing was formally presented to the court, lack of consent was not determinative, and in one case the court questioned whether the clinicians were even required to seek consent from the parents of a child at all.

Developing a digital informed consent app: opportunities and challenges of a new format to inform and obtain consent in public health research.

BACKGROUND: Informed consent procedures for large population-based cohort studies should be comprehensive and easy-to-use. This is particularly challenging when participants from different socio-economic groups and multicultural ethnic backgrounds are involved. Recently, more and more studies have tried to use multimedia in informed consent procedures. We describe the development and testing of a digital informed consent app and elaborate on whether this may contribute to a comprehensive and practical procedure to obtain informed consent for public health research. METHODS: In a sample of parents with young children, we used a mixed method approach to study the user experience of an informed consent app and evaluate whether it can be used to adequately inform people and register their consent. Through semi-structured interviews we investigated participants' experiences with and opinions about the app, with a special focus on comprehensibility of the content and the usability of the app. Information retention questions were asked to evaluate to what extent participants could recall key aspects of the provided study information. RESULTS: The 30 participants in this study used the app between 4 and 15 min to give their consent. Overall, they found the app well-designed, informative and easy to use. To learn more about the study for which informed consent is asked, most of the participants chose to watch the animated film, which was generally found to convey information in a clear manner. The identification process was met with mixed reactions, with some feeling it as a secure way to give consent, while for others it contradicted their view of using data anonymously. Information retention questions showed that while all participants remembered various aspects of the study, fewer than half answered all four questions satisfactorily. CONCLUSION: Our study shows that a well-designed informed consent app can be an effective tool to inform eligible participants and to record consents. Still, some issues remain, including trust barriers towards the identification procedure and lack of information retention in some participants. When implementing consent procedures that incorporate digital formats, it may be beneficial to also invest in a complementary face-to-face recruitment approach.

"When you get the HPV vaccine, it will prevent cervical cancer; it will act as a shield": adolescent girls' knowledge and perceptions regarding the human papillomavirus vaccine in Zambia.

Introduction: The human papillomavirus (HPV) vaccination is an important preventive measure for HPV-related conditions such as cervical cancer. In 2019, Zambia introduced a free national HPV vaccination program for 14-year-old girls. However, the adolescents' knowledge and perceptions regarding the HPV vaccine are not well understood. Therefore, this study aimed to understand adolescent girls' knowledge and perceptions regarding the HPV vaccine and discuss its acceptability and uptake implications. Methods: We conducted a qualitative study in the Lusaka district between June 2021 and November 2021 using semi-structured interviews with adolescent girls aged 15-18 years regardless of their HPV vaccination status. Interviews were transcribed verbatim, and NVIVO 12 was used for data management and analysis. We coded transcripts deductively and inductively based on emerging themes. Perceptions were coded using the health belief model constructs. Results: We interviewed 30 adolescent girls to reach saturation. Seventeen girls reported having received at least one dose of the HPV vaccine. Participants expressed variable knowledge and awareness about HPV and the HPV vaccine. Participants exhibited positive attitudes towards the HPV vaccine and perceived it as beneficial. However, there were multiple perceived barriers to vaccination, such as the need for parental consent, not being in school, concerns about vaccine side effects, and belief in myths and misinformation. Conclusion: The adolescent girls in this study showed variable knowledge and positive attitudes toward the HPV vaccine despite the many perceived barriers. To support increased HPV vaccine acceptability and uptake among adolescent girls in Zambia, it is critical to actively engage stakeholders involved in HPV vaccination, such as adolescents and their parents, and debunk myths and misconceptions about HPV vaccination. Health education in schools and communities should be implemented to increase knowledge about HPV and HPV vaccination among adolescents and their parents.

Encouraging greater empowerment for adolescents in consent procedures in social science research and policy projects.

The United Nations Convention on the Rights of the Child emphasizes the importance of allowing children and adolescents to influence decisions that are important to them following their age and maturity. This paper explores the principles, practices, and implications around using parental versus child/adolescent consent when participating in social science research and policy development. Experiences from two studies are presented: The Confronting Obesity: Co-creating policy with youth (CO-CREATE) and the Health Behaviour in School-aged Children (HBSC) study, a World Health Organization (WHO) Collaborative Cross-National study. Although parental consent may be an important gatekeeper for protecting children and adolescents from potentially harmful research participation, it may also be considered an obstacle to the empowerment of children and adolescents in case they want to share their views and experiences directly. This paper argues that evaluation of possible harm should be left to ethics committees and that, if no harm related to the research participation processes is identified and the project has a clear perspective on collaborating with the target group, adolescents from the age of 12 years should be granted the legal capacity to give consent to participate in the research project. Collaboration with adolescents in the development of the research project is encouraged.

Ethical Aspects of Involving Adolescents in HIV Research: A Systematic Review of the Empiric Literature.

OBJECTIVE: To evaluate the ethics of involving adolescents in HIV research, we conducted a systematic review of the empiric literature. METHODS: Electronic databases Ovid Medline, Embase, and CINAHL were systematically searched using controlled vocabulary terms related to ethics, HIV, specified age groups, and empiric research studies. We reviewed titles and abstracts, including studies that collected qualitative or quantitative data, evaluated ethical issues in HIV research, and included adolescents. Studies were appraised for quality, data were extracted, and studies were analyzed using narrative synthesis. RESULTS: We included 41 studies: 24 qualitative, 11 quantitative, 6 mixed methods; 22 from high-income countries (HIC), 18 from low- or middle-income countries (LMIC), and 1 from both HIC and LMIC. Adolescent, parent, and community perspectives assert the benefits of involving minors in HIV research. Participants in LMIC expressed mixed views regarding parental consent requirements and confidentiality, given adolescents' both increasing autonomy and continued need for adult support. In studies in HIC, sexual or gender minority youth would not participate in research if parental consent were required or if there were confidentiality concerns. There was variation in the comprehension of research concepts, but adolescents generally demonstrated good comprehension of informed consent. Informed consent processes can be improved to increase comprehension and study accessibility. Vulnerable participants face complex social barriers that should be considered in study design. CONCLUSIONS: Data support the inclusion of adolescents in HIV research. Empiric research can inform consent processes and procedural safeguards to ensure appropriate access.

Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research.

To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent decision-making, adolescents appreciated exercising independence, while parents valued both adolescent and parental independence. Joint decision-making allowed each to hear the other's viewpoints. Some found joint decision-making irrelevant but recognized it might help others. Overall, adolescents and parents had similar reasons for finding the two-step decision-making process helpful. Our findings support using such a process for engaging parents and adolescents in challenging research and clinical decisions.

Information and Parental Consent for French Neonatal Screening: A Qualitative Study on Parental Opinion.

Neonatal screening has excellent coverage in France. Data from the foreign literature raise questions about the informed consent to this screening. The Neonatal Screening and Informed Consent Dépistage Néonatal Information et Consentement Eclairé (DENICE) study was designed to assess whether information on neonatal screening provided for families in Brittany allows for informed consent. A qualitative methodology was chosen to collect parents' opinions on this topic. Twenty semi-structured interviews were conducted with twenty-seven parents whose children had positive neonatal screening for one of six diseases. The five main themes from the qualitative analysis were knowledge of neonatal screening, information received by parents, parental choice, the experience of the screening process, and parents' perspectives and wishes. Informed consent was weakened by parents' lack of knowledge regarding choice and the absence of a parent after birth. The study found that more information about screening during pregnancy would be preferable. The information should be repeated and accessible and should make it clear that neonatal screening is not mandatory, but informed consent should be obtained from parents who choose to screen their newborns.

Effectiveness of strategies to increase participation in school-based epidemiological surveys: a rapid review.

OBJECTIVE: Rapid review of the literature on strategies to increase participation rates in school-based epidemiological surveys. BASIC RESEARCH DESIGN: Rapid review. MEDLINE and Embase databases were searched for articles written in English from 2000 onwards. Synthesised evidence and primary research were included as data sources from peer reviewed journals and reports. INTERVENTIONS: Any strategy aiming to increase participation in school-based health surveys. The comparator was usual procedure or an alternative strategy to increase participation. MAIN OUTCOME MEASURES: Primary outcomes included participation and consent rates. Secondary outcomes were feasibility, acceptability and adverse effects. RESULTS: The search identified 591 unique records, of which 587 were excluded. Four studies were suitable for inclusion, including one systematic review, one randomised controlled trial, one cross-sectional study and one retrospective analysis. Based on very low certainty evidence, recommendations for maximising participation rates in one systematic review of US studies included: promoting the survey to school staff, parents and students; disseminating study information using direct rather than mediated methods; offering incentives to schools, staff and participants; following up non-responders; and employing a research team member to co-ordinate and monitor recruitment. However, UK studies found that different strategies did not increase participation more than that achieved by a standard approach (delivery of covering letter/consent forms via the child with no follow-up of non-responders). CONCLUSION: Given the lack of evidence of effectiveness of alternative strategies in the UK, additional measures beyond existing standard approaches for active consent cannot be recommended.

Minors' Experiences Accessing Confidential Contraception in Texas.

PURPOSE: Texas is one of 24 states that restricts minors' ability to obtain contraception without parental consent, unless they access confidential services at federally funded Title X clinics. This study explores Texas minors' reasons for and experiences seeking confidential contraception. METHODS: Between September 2020 and June 2021, we conducted in-depth phone interviews with 28 minors aged 15-17 years. Participants were recruited via the text line and Instagram account of an organization that helps young people navigate Texas' parental consent laws. Interview transcripts were coded and analyzed using inductive and deductive codes in our thematic analysis. RESULTS: Participants wanted to be proactive about preventing pregnancy by using more effective contraceptive methods but faced resistance from adults when they initiated conversations about sex and contraception or tried to obtain consent. In the absence of adult support, they turned to online and social media resources for information about types of contraception but encountered challenges finding accurate information about where to obtain methods in Texas without a parent. Only 10 participants were able to attend an appointment for contraception. Parents' increased monitoring of minors' activities during the COVID-19 pandemic, combined with transportation and appointment-scheduling barriers, made it difficult for minors to attend in-person visits, particularly if clinics were farther away. DISCUSSION: Minors in Texas faced a range of barriers to finding accurate information and obtaining confidential contraceptive services, which were exacerbated by the COVID-19 pandemic. Expanding options for accessible confidential contraception, along with repealing parental consent laws, would better support minors' reproductive autonomy.

Age-of-consent requirements and adolescent HIV testing in low-and middle-income countries: multinational insights from 51 population-based surveys.

BACKGROUND: Pervasive social and structural barriers-including national policies-inhibit HIV testing uptake among priority populations, including adolescents. We assessed the relationship between age-of-consent policies for HIV testing and adolescent HIV testing coverage in 51 low- and middle-income countries. METHODS: We pooled data from household surveys (2010-2020) and calculated the weighted country-level prevalence of lifetime HIV testing separately for adolescent girls and boys (ages 15-19). We then abstracted age-of-consent requirements for HIV testing across countries. Using multivariable linear regression, we estimated the average difference in national HIV testing coverage estimates for adolescent girls and boys by age-of-consent restrictions for HIV testing. RESULTS: National HIV testing coverage estimates ranged from 0.7% to 72.5% among girls (median: 18.0%) and 0% to 73.2% among boys (median: 7.5%) in Pakistan and Lesotho, respectively. In adjusted models, HIV testing coverage in countries requiring parental consent for individuals <18 years was, on average, 9.4 percentage-points (pp) lower (95% confidence interval [95%CI] -17.9pp to -0.9pp) among girls and 9.3pp lower (95%CI: -17.3pp to -1.2pp) among boys, relative to countries with less restrictive policies (age-of-consent: ≤16 years). Compared to countries with less restrictive (age-of-consent: ≤14 years) policies, HIV testing prevalence was significantly lower among girls (ß -10.5pp, 95%CI: -19.7pp to -1.3pp) and boys (ß -10.5pp, 95%CI -19.2pp to -1.8pp) in countries with more restrictive (age-of-consent: 18 years) parental consent requirements. CONCLUSIONS: Age-of-consent policies are persistent obstacles to adolescent HIV testing. Repealing parental consent requirements for HIV testing is needed to expand coverage and accelerate progress towards global HIV treatment and prevention targets.