Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation
Sarah L. Mayer, Michelle R. Brajcich, Lionola Juste, Jesse Y. Hsu, Nadir Yehya
Original Investigation Pediatrics
JAMA Network Open, 15 May 2024
Key Points
Question
Are sociodemographic factors associated with rates of approach and consent for pediatric intensive care unit (PICU) research?
Findings
This cohort study of 3154 children found disparities in approach and consent according to race and ethnicity, language, religion, and degree of social deprivation. Lower consent rates were partly mediated by lower approach rates, with reduced approach mediating approximately half of the lower rates of consent for Black children.
Meaning
In this study, multiple sociodemographic variables were associated with disparate consent rates for PICU research, and strategies to increase approaches could contribute to equitable enrollment in PICU studies.

Abstract
Importance
While disparities in consent rates for research have been reported in multiple adult and pediatric settings, limited data informing enrollment in pediatric intensive care unit (PICU) research are available. Acute care settings such as the PICU present unique challenges for study enrollment, given the highly stressful and emotional environment for caregivers and the time-sensitive nature of the studies.
Objective
To determine whether race and ethnicity, language, religion, and Social Deprivation Index (SDI) were associated with disparate approach and consent rates in PICU research.
Design, Setting, and Participants
This retrospective cohort study was performed at the Children’s Hospital of Philadelphia PICU between July 1, 2011, and December 31, 2021. Participants included patients eligible for studies requiring prospective consent. Data were analyzed from February 2 to July 26, 2022.
Exposure
Exposures included race and ethnicity (Black, Hispanic, White, and other), language (Arabic, English, Spanish, and other), religion (Christian, Jewish, Muslim, none, and other), and SDI (composite of multiple socioeconomic indicators).
Main Outcomes and Measures
Multivariable regressions separately tested associations between the 4 exposures (race and ethnicity, language, religion, and SDI) and 3 outcomes (rates of approach among eligible patients, consent among eligible patients, and consent among those approached). The degree to which reduced rates of approach mediated the association between lower consent in Black children was also assessed.
Results
Of 3154 children included in the study (median age, 6 [IQR, 1.9-12.5] years; 1691 [53.6%] male), rates of approach and consent were lower for Black and Hispanic families and those of other races, speakers of Arabic and other languages, Muslim families, and those with worse SDI. Among children approached for research, lower consent odds persisted for those of Black race (unadjusted odds ratio [OR], 0.73 [95% CI, 0.55-0.97]; adjusted OR, 0.68 [95% CI, 0.49-0.93]) relative to White race. Mediation analysis revealed that 51.0% (95% CI, 11.8%-90.2%) of the reduced odds of consent for Black individuals was mediated by lower probability of approach.
Conclusions and Relevance
In this cohort study of consent rates for PICU research, multiple sociodemographic factors were associated with lower rates of consent, partly attributable to disparate rates of approach. These findings suggest opportunities for reducing disparities in PICU research participation.

Ethical Frameworks of Informed Consent in the Age of Pediatric Precision Medicine
David Chen
Precision Medicine, 6 May 2024
Abstract
Precision medicine is an emergent medical paradigm that uses information technology to inform the use of targeted therapies and treatments. One of the first steps of precision medicine involves acquiring the patient’s informed consent to protect their rights to autonomous medical decision making. In pediatrics, there exists mixed recommendations and guidelines of consent related practices designed to safeguard pediatric patient interests while protecting their autonomy. Here, we provide a high-level, clinical primer of 1) ethical informed consent frameworks widely used in clinical practice and 2) promising modern adaptations to improve informed consent practices in pediatric precision medicine. Given the rapid scientific advances and adoption of precision medicine, we highlight the dual need to both consider the clinical implementation of consent in pediatric precision medicine workflows as well as build rapport with pediatric patients and their substitute decision-makers working alongside interdisciplinary health teams.

Editor’s note: The modern adaptions mentioned by the authors include having a two-step consent process, providing options for pediatric patients to exercise their right to re-consent for continued use of genomic data at the age of majority, and using broad consent strategies.

The Role of Parental Consent in Counseling for Minors: Requirement or Necessity?
Novianti Novianti, Nandang Budiman, Nadia Aulia Nadhirah
Indonesian Journal of Guidance and Counseling Research, 27 April 2024
Abstract
The purpose of this study is to determine the Role of Parental Consent in Counseling Minors. This research uses the systematic literature review (SLR) method. Based on the results of the synthesis, the urgency of parental consent before the implementation of counseling for minors is as a condition, not a necessity, which means that it must only be fulfilled administratively so that counseling can be carried out but does not have a significant impact on the implementation of counseling. The conclusion of the study reveals that counselors must continue to prioritize the rights and trust of children in conducting counseling, the limits of decisions that can be taken by minors without intervention from parents need to be studied more deeply in further research. The contribution of this research can be used as one of the ethical references for school counselors both theoretically and practically, especially when dealing with minors.