Individual Research Participants Research Articles

Phase 2 pilot trial to optimise pharmacometric evaluations in Chagas disease (CHARM: CHAgas disease PharMacometrics)

Chagas disease is a neglected disease caused by Trypanosoma cruzi that currently affects about 7 million people in the Americas and the American diaspora. Only two drugs are available to treat Chagas disease, both are associated with a high incidence of adverse events, particularly in adults, and they are also complex to administer. New treatments are needed urgently, but there is no established method of evaluating new drugs. We describe the study protocol for a pilot phase 2 descriptive observational study of parasite dynamics within the host, followed by a randomised evaluation of the pharmacokinetic-pharmacodynamic properties of subcurative doses of anti-chagasic drugs in patients with chronic Chagas disease. This study is divided into three stages. The general objective of the study is to characterise the dynamics of the parasite within the host at steady state and the pharmacokinetic-pharmacodynamic relationships for each of the three drugs studied. This is based on characterising the structure and parameters of a pharmacodynamic model of parasite turnover within the host. Each stage of the study targets specific key parameters in the pharmacodynamic model of parasite dynamics (both the blood stage and the tissue stage) for individual research participants. The primary outcome measure for all three stages is blood-stage parasite density, measured by quantitative PCR. Upon completion, research participants will receive definitive treatment for Chagas disease in accordance with national guidelines. Registration ISRCTN (ISRCTN26467068; 01/07/2021).

Common Patterns of Cisgender Use in Public Health Articles and Their Implications for Gender Inclusivity Efforts, 2013‒2020.

Objectives. To identify how "cisgender" has been used in public health articles in recent years relative to the historical origins of the term to mark normative gender and describe systems of social power. Methods. I analyzed 352 US-focused public health articles (2013-2020) using a summative content analysis approach. I traced cisgender use by year and compared it by sample population (cisgender-only, mixed, not cisgender). Results. I identified 4 interlocking and mutually reinforcing patterns of cisgender use: limited and narrow use, undertheorized use, use as the default gender, and reinforcing binary categorization. These patterns largely result from the narrowing of cisgender to a demographic label. Conclusions. Cisgender is primarily used to categorize individual research participants as not transgender rather than to reflect participants' actual identity and experiences within gendered systems of power, which undermines cisgender's potential to support gender-inclusivity efforts and deepen understandings of gender-based health disparities. Public Health Implications. Two paths for creating more robust use of cisgender are (1) supporting gender inclusivity by clarifying and standardizing how and when the demographic category is used and (2) expanding the analytic potential of cisgender by returning to its historical origins as a framework for exposing and explaining patterns of power. (Am J Public Health. 2024;114(2):202-208. https://doi.org/10.2105/AJPH.2023.307441).

Comparing characteristics among ADRC cohorts stratified by percentage of autopsied cases that were normal versus demented at visit prior to death

AbstractBackgroundDementia‐enriched research studies and normal control‐enriched research studies have different recruitment models and thus may differ in clinical and demographic characteristics. These distinctions can contribute to different study findings and perspectives. We generated a novel operationalization for cohort status in NIA‐funded Alzheimer’s Disease Research Centers (ADRC), based on the proportion of research participants that were normal, or demented, prior to death. Based on that operationalization, we compared differences in the rates of several clinical features among participants who came to autopsy.MethodData were obtained from the National Alzheimer’s Coordinating Center (NACC). Eligibility criteria included participants with autopsy data available and ADRCs with > = 30 eligible participants. 31 different ADRC autopsy cohorts were thus included, and the total number of individual research participants was 6,722. The first 3 digits of participant zip codes were included in the study. ADRCs were assigned to two groups based on the proportion of participants with normal cognition to participants with dementia. The “more non‐demented “(MN; n = 18) group included ADRCs with >10% ratio of normal to dementia participants, while the “more dementia” (MD; n = 13) group included ADRCs with <10% ratio of normal to dementia participants. Clinical features and diagnoses were compared between the two groups using Pearson’s chi‐square for the categorical variables and two‐sample t‐tests for the continuous variables.ResultThe overall cohort sizes were similar between groups and clinical Alzheimer’s disease (AD) was diagnosed at similar rates in both MN and MD ADRCs. MD ADRCs had more frontotemporal lobar degeneration (FTLD) and Lewy body disease (LBD) diagnoses than MN centers, while MN centers had more cerebrovascular disease and participants were on average older at death than those in MD ADRCs. Other trends identified were that MN ADRCs had lower rates of APOEɛ4 and MD ADRCs tended to include cases from a larger number of different zip codes.ConclusionIn this sample, we found differences in clinical features between MD and MN ADRCs that probably reflect study designs related to recruitment practices. Future research examining additional features may yield further elaborate discrepancies found between these types of autopsy cohorts.

Sensory-based transmethodology in practice research

In this article, I present a sensory-based transmethodological research approach based on body-phenomenological conceptualizations of embodied memory and lived experiences, and on cultural-historical conceptualizations of modes of socializing behavior and mediating means as the nexus for personal learning and development. The transmethodology combines sensory methods to study individual research participants’ lived experiences and describe them in detail, and methods to study how these same individuals use sociocultural mediating means in communication and to make meaning of their lived experiences as participants in social communities of practice. The particular methodology was developed during practice research, where we as a research team engaged in embodied and contemplative practices together with student teachers in Denmark to explore how they experienced the effects of contemplative practices on their encounters with students, colleagues, or parents in challenging situations during their education and in school practice as newly educated teachers. The practices of the sensory-based transmethodology created a corpus of qualitative data with the potential to transform our ideas about relationship-building and education.

Can the Research Team-Participant Relationship Ground Ancillary-Care Obligations?

Discussion of medical researcher teams' ancillary-care obligations has long been dominated by partial-entrustment theory, developed in 2004 by the author of this article, in collaboration with Leah Belsky. Critics of the limited scope of the special ancillary-care obligations defended by that theory, however, argue that a better theory would take fuller account of the relationship that develops between individual research participants and members of the research team. Nate W. Olson and Thaddeus Metz have each put forward well worked-out versions of such a relationship-based account of ancillary-care obligations. This article critically evaluates these accounts, concluding that while each of them is vulnerable to various criticisms, each also crucially facilitates understanding of this relationship: Olson brings out well how research participants can find that role not just beneficial but also deeply meaningful, and Metz, drawing on African ethical traditions, emphasizes that when things go well, participants are involved as partners in the research effort. Yet the article closes by arguing that the partial-entrustment theory, surprisingly, can take on board each of these lessons. As so enhanced, it may actually be the best available relationship-based theory of this subject.

Survey of Investigators About Sharing Human Research Data in the Neurosciences.

In the neurosciences, significant opportunities for sharing individual-level data are underexploited. Commentators suggest various barriers to data sharing, which may need to be addressed. Investigators' perspectives on the main barriers are unclear. Furthermore, bioethicists have raised concerns about the potential misuse of neuroscience data, although discussions are hampered by uncertainty about the potential risks. It is unclear how common sensitive data are obtained and whether investigators judge them as sensitive. An online survey was disseminated among 1,190 principal investigators (PIs) of active National Institute of Neurological Disorders and Stroke, National Institute of Mental Health, or NIH Brain Research Through Advancing Innovative Neurotechnologies Initiative grants involving human subject research. A total of 397 investigators responded to the survey (response rate 33%). Most investigators (84%) support efforts to increase sharing of deidentified individual-level data. However, investigators perceive many barriers to data sharing. The largest barriers were costs and time; limited interpretation of the data without understanding the context of data collection; lack of incentives; limited standardization and norms for data acquisition, formatting, and description; and heterogeneity of data types. Several types of data described as sensitive in the literature are common among neuroscience studies, for example, neural correlates of behavior, emotions, or decision making (71%) and/or predictive data (54%). Although most investigators consider it unlikely or extremely unlikely for their research data to be misused to harm individual research participants (82%), the majority were at least slightly concerned about potential harm to individuals if their research data were misused (65%). Investigators with more easily reidentifiable data, data from vulnerable groups, and neural data were more concerned about the likelihood of misuse and/or magnitude of harm of misuse of their research data. We hope these data help prioritize the development of tools and strategies to overcome the main barriers to data sharing. Furthermore, these data provide input on what may be sensitive data for which additional safeguards should be considered.

Harmonization-Information Trade-Offs for Sharing Individual Participant Data in Biomedicine.

Biomedical practice is evidence-based. Peer-reviewed papers are the primary medium to present evidence and data-supported results to drive clinical practice. However, it could be argued that scientific literature does not contain data, but rather narratives about and summaries of data. Meta-analyses of published literature may produce biased conclusions due to the lack of transparency in data collection, publication bias, and inaccessibility to the data underlying a publication ('dark data'). Co-analysis of pooled data at the level of individual research participants can offer higher levels of evidence, but this requires that researchers share raw individual participant data (IPD). FAIR (findable, accessible, interoperable, and reusable) data governance principles aim to guide data lifecycle management by providing a framework for actionable data sharing. Here we discuss the implications of FAIR for data harmonization, an essential step for pooling data for IPD analysis. We describe the harmonization-information trade-off, which states that the level of granularity in harmonizing data determines the amount of information lost. Finally, we discuss a framework for managing the trade-off and the levels of harmonization. In the coming era of funder mandates for data sharing, research communities that effectively manage data harmonization will be empowered to harness big data and advanced analytics such as machine learning and artificial intelligence tools, leading to stunning new discoveries that augment our understanding of diseases and their treatments. By elevating scientific data to the status of a first-class citizen of the scientific enterprise, there is strong potential for biomedicine to transition from a narrative publication product orientation to a modern data-driven enterprise where data itself is viewed as a primary work product of biomedical research.

Radical Reciprocity: The Work and Research Methods of Elaine J. Lawless

This article explores the impact of reciprocal ethnography on research participants based on the published works of Elaine J. Lawless. The methodological impact of reciprocal ethnography is under analyzed throughout Lawless's books and articles, even though there are glimpses into how the research participants are affected within each project. Initially, reciprocal ethnography offered an approach that might shape a parallel relationship between the researcher and her research participants, creating insights and ideas that resulted because of reciprocity and dialogue. Later, it evolved into a process with the potential for shared power in the construction of meaning, the possible creation of some social awareness for individual research participants, as well as change in a larger sense. Ultimately, reciprocal ethnography is a methodology that structures opportunities for participants to engage in dialogue with other research participants and with the researcher—and to engage in (self) analysis—that can yield new insights, revised beliefs, and changed relationships, all methodological outcomes worth recognizing and analyzing more extensively.

Equipoise in Clinical Trials: Enough Uncertainty in Whose Opinion?

Equipoise in Clinical Trials: Enough Uncertainty in Whose Opinion?

The triple aim of clinical research.

The proposed triple aim of health care-enhanced patient experience, improved population health, and reduced per capita costs-can be applied to clinical research. A triple aim for clinical research would (1) improve the individual research participant's experience; (2) promote the health of populations; and (3) reduce per capita costs of clinical research. Such an approach is possible by designing trials around the needs of participants rather than sites, embracing digital measures of health, and advancing decentralized studies. Recent studies, including those evaluating therapies for COVID-19, have demonstrated the value of such an approach. Accelerating the adoption of these methods can help fulfill this new triple aim of clinical research.

Extending Research Protections to Tribal Communities

The history of research in American Indian/Alaska Native (AI/AN) communities has been marked by unethical practices, resulting in mistrust and reluctance to participate in research. Harms are not limited to individual persons—tribal communities experience harmful misrepresentation and generalizations disrespectful of AI/AN groups’ heritage, cultures, and beliefs. The Belmont Report’s research ethics principles are applied primarily to protect individual research participants. The principles of sovereignty and solidarity are argued to be important concepts in extending Belmont’s research protections to tribal communities. Sovereignty, an expression of respect for autonomy at a group level, is the basis for tribal self-determination. The principle of solidarity provides an ethical underpinning for tribes’ obligations to protect community interests and culture. Extension of Belmont through these principles should serve to minimize harms to AI/AN groups in research.

Reporting Genetic Findings to Individual Research Participants: Guidelines From the Swiss Personalized Health Network.

In 2017 the Swiss federal government established the Swiss Personalized Health Network (SPHN), a nationally coordinated data infrastructure for genetic research. The SPHN advisory group on Ethical, Legal, and Social Implications (ELSI) was tasked with the creation of a recommendation to ensure ethically responsible reporting of genetic research findings to research participants in SPHN-funded studies. Following consultations with expert stakeholders, including geneticists, pediatricians, sociologists, university hospitals directors, patient representatives, consumer protection associations, and insurers, the ELSI advisory group issued its recommendation on “Reporting actionable genetic findings to research participants” in May 2020. In this paper we outline the development of this recommendation and the provisions it contains. In particular, we discuss some of its key features, namely: (1) that participation in SPHN-funded studies as a research subject is conditional to accepting that medically relevant genetic research findings will be reported; (2) that a Multidisciplinary Expert Panel (MEP) should be created to support researchers’ decision-making processes about reporting individual genetic research findings; (3) that such Multidisciplinary Expert Panel will make case-by-case decisions about whether to allow reporting of genetic findings, instead of relying on a pre-defined list of medically relevant variants; (4) that research participants shall be informed of the need to disclose genetic mutations when applying for private insurance, which may influence individual decisions about participation in research. By providing an account of the procedural background and considerations leading to the SPHN recommendation on “Reporting actionable genetic findings to research participants,” we seek to promote a better understanding of the proposed guidance, as well as to contribute to the global dialog on the reporting of genetic research findings.

For the greater good? Ethical reflections on interviewing the ‘rich’ and ‘poor’ in qualitative research

ABSTRACT There is increasing emphasis on understanding economic advantage alongside disadvantage – on studying both ‘poverty’ and ‘riches’. This trend prompts and requires new ethical reflection. I argue that in qualitative interview research, a clearer distinction needs to be drawn between ethical commitments to individual research participants, and the group(s) to which they belong. This distinction is often elided in ethics guidelines and when researchers discuss their own work. Attending to the distinction highlights a symmetrical ethical dilemma: researchers studying disadvantage are often motivated to further the interests of the wider group to which their participants belong, yet the study itself risks eliciting or exacerbating negative experiences or identities amongst participants themselves. Conversely, the process of studying advantage frequently bolsters the positive identities or experiences of individual study participants, even as the research findings challenge or subvert the interests of their group.

Psychiatric genomics researchers’ perspectives on best practices for returning results to individual participants

PurposeLarge-scale array-based and sequencing studies have advanced our understanding of the genetic architecture of psychiatric disorders, but also increased the potential to generate an exponentially larger amount of clinically relevant findings. As genomic testing becomes more widespread in psychiatry research, urgency grows to establish best practices for offering return of results (RoR) to individuals at risk or diagnosed with a psychiatric disorder. MethodsWe interviewed an international sample (n = 39) of psychiatric genetics researchers to examine conceptualizations of “best practices” for RoR to individual research participants. ResultsWhile the vast majority of researchers do not offer RoR, most believed medically actionable findings (85%) and clinically valid but non–medically actionable findings (54%) should be offered. Researchers identified three main areas for improvement: interfacing with individual participants; interdisciplinary training, guidance, and integration; and quality planning and resource allocation for returning results. ConclusionThere are significant gaps between researchers’ visions for “best” versus “actual” RoR practices. While researchers call for participant-centered practices, including consent practices that consider any special needs of participants with psychiatric disorders, return of individually meaningful results, and effective follow-up and provisions for treatment, the current reality is that consent and RoR practices lack standardized and evidence-based norms.

Commentary 2: Qualitative Research with Vulnerable Persons-How to Ensure that Burdens and Benefits are Proportional and Fairly Distributed.

This case commentary investigates whether the risks and benefits of an interview study with persons under involuntary commitment on open-door policies in psychiatry were proportional and fairly distributed. Given that there is little data available on the views of service users on open-door policies, the study had significant social value. Because the individual benefits are limited in studies like this, we recommend that special measures be taken to forestall what has been called the "therapeutic misconception." The study imposed burdens on individual research participants, as evidenced by the distress that a woman with bipolar disorder experienced during the interview. Risks and burdens must be actively monitored in qualitative studies with persons under involuntary commitment. If the actual burdens are disproportional, interviews must be interrupted and risks must be reassessed. A common principle for the fair distribution of the risks and burdens of research participation says that a research study may be carried out with vulnerable persons only if the research aims cannot be attained by including only persons who are not vulnerable. In the study under discussion, both persons who were still involuntarily committed and persons who were no longer committed were included. This indicates that either the aforementioned principle is not fully satisfied or the validity of the study is somewhat compromised. Judging that the latter option is more likely, we contend that this compromise is ethically defensible.

A Narrative Inquiry Study on Inclusive Classroom Management Experience -with a Special Reference to Master’s Degree Program Students majored in early childhood special education at Graduate School of Special Education-

본 연구는 통합학급 운영 경험이 있는 일반유치원 교사들이 대학원에서 유아특수교육을 공부하며 통합교육에 대한 인식이 어떻게 변화되어 가는지 내러티브 탐구를 통해 이야기하고자 하였다. 이를 위하여 특수교육대학원에서 유아특수교육을 공부하면서 5년 이상의 통합학급 운영 경험이 있는 일반 유치원 교사 2명을 대상으로 개별심층면담과 연구 참여자 일지를 통하여 자료를 수집하고 내러티브탐구 절차에 따라 자료를 분석하였다. 연구 결과 일반유치원 교사들은 유아특수교육을 공부하면서 다음과 같은 변화를 겪는 것으로 나타났다. 첫째, 일반유치원 교사는 유아특수교육을 공부함으로써 통합교육 교사로서의 교육철학을 가지게 되었다. 둘째, 일반유치원 교사는 유아특수교사와의 협력의 중요성을 인식하였다. 셋째, 일반유치원 교사는 장애유아 부모에게 교육전문가로서 담임교사 역할을 할 수 있는 적극성을 가지게 되었다. 넷째, 일반유치원 교사는 효과적인 통합교육 실행방법을 다양한 관점에서 이야기할 수 있게 되었다. 본 연구는 통합유치원 교사에게 통합학급을 효과적으로 운영하기 위한 유용한 자료와 실제적인 방법을 제시하는데 도움을 줄 것이다.The purpose of this study is to show that how the inclusive kindergarten teachers who have studied early childhood special education at graduate school have become positive perception on inclusive classroom management experience. For this purpose, a qualitative narrative inquiry study was used and two kindergarten teachers who had experience of operating inclusive classrooms for more than five years while studying early childhood special education at the graduate school participated. Research design was used through individual in-depth interviews and research participants’ diaries, and data were analyzed according to the narrative inquiry procedure. As a result of this study, general kindergarten teachers showed the following changes while studying early childhood special education. First, general kindergarten teachers have become education philosophy as an inclusive education teacher by studying early childhood special education. Second, they have recognized the importance of cooperation with early childhood special education teachers by studying the graduate studies. Third, they have become more active teachers of education to the parents of children with disabilities. Fourth, it is possible to talk about how to implement effective inclusive education from various perspectives. This study will be expected to provide helpful data and effective methods for effectively operating inclusive education for inclusive kindergarten teachers.

PSYCHIATRIC GENOMICS RESEARCHERS’ PERSPECTIVES ON BEST PRACTICES FOR RETURNING RESULTS TO INDIVIDUAL PARTICIPANTS

Large-scale array-based and sequencing studies have advanced our understanding of the genetic architecture of psychiatric disorders, but also increased the potential to generate an exponentially larger amount of clinically relevant findings. As genomic testing becomes more widespread in psychiatry research, urgency grows to establish best practices for offering return of results (RoR) to individuals at risk or diagnosed with a psychiatric disorder. We interviewed an international sample (n = 39) of psychiatric genetics researchers to examine conceptualizations of “best practices” for RoR to individual research participants. While the vast majority of researchers do not offer RoR, most believed medically actionable findings (85%) and clinically valid but non–medically actionable findings (54%) should be offered. Researchers identified three main areas for improvement: interfacing with individual participants; interdisciplinary training, guidance, and integration; and quality planning and resource allocation for returning results. There are significant gaps between researchers’ visions for “best” versus “actual” RoR practices. While researchers call for participant-centered practices, including consent practices that consider any special needs of participants with psychiatric disorders, return of individually meaningful results, and effective follow-up and provisions for treatment, the current reality is that consent and RoR practices lack standardized and evidence-based norms.

Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand

BackgroundResearch funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad consent to data sharing in January 2016.MethodsBetween February and August 2017 qualitative data were collected at two sites, Bangkok and the Thai-Myanmar border town of Mae Sot. We conducted eighteen semi-structured interviews. We also conducted four focus group discussions with a total of nineteen people. Descriptive and thematic coding informed analysis of aspects of data sharing that are considered most important to inform participants about, and the best ways to explain complex and abstract topics relating to data sharing.ResultsThe findings demonstrated that clinical trial participants prioritise information about the potential benefits and harms of data sharing. Stakeholders made multiple suggestions for clarifying information provided about data sharing on such topics. There was significant variation amongst stakeholders’ perspectives about how much information should be provided about data sharing, and it was clear that effective information provision should be responsive to the study, the study population, the individual research participant and the research context.ConclusionsEffectively communicating about data sharing with research participants is challenging in practice, highlighting the importance of robust and effective data sharing governance in this context. Broad consent should incorporate effective and efficient explanations of data sharing to promote informed decision-making, without impeding research participants’ understandings of key aspects of the research from which data will be shared. Further work is required to refine both the development of core information about data sharing to be provided to all research participants, and appropriate solutions for context specific-challenges arising when explaining data sharing.

New and Improved? 21st Century Cures Act Revisions to Certificates of Confidentiality.

Certificates of Confidentiality ("Certificates") are a federal legal tool designed to protect sensitive, identifiable research data from compelled disclosure. Congress first authorized their use in 1970 to facilitate research on illegal drug use. The scope of their use was later expanded to cover mental health research and then again to apply broadly to identifiable, sensitive research data, regardless of topic. Certificates can be critical to enabling conduct of essential research on sensitive topics, such as effective interventions to curb the opioid epidemic or reduce HIV transmission among minority youth. Nevertheless, there have been criticisms about Certificates and their use on several grounds. For example, researchers and institutional review boards ("IRBs") may lack sufficient knowledge about them and, therefore, may not consider using them in studies for which they would be appropriate. In contrast to other protections, such as Department of Justice Privacy Certificates, Certificate protections were not automatically extended to these studies, but instead required an application. In addition, the concept of identifiable data had not kept up with technological changes that may allow for reidentification of data previously considered unidentifiable. Although a researcher who obtained a Certificate could use it to resist a legal demand for identifiable data, little was known about the actual effectiveness of the protection provided. The 21st Century Cures Act substantially revises the Certificates authorizing statute, and many of the changes are directly responsive to the criticisms that have been raised. Significantly, the Secretary of the Department of Health and Human Services ("HHS") must issue Certificate protection to federally funded research involving identifiable, sensitive research data, and the National Institutes of Health ("NIH") will automatically include such protections to research it funds. Non-federally funded researchers can continue to apply for Certificate protection. The definition of identifiable has been expanded to include data "for which there is at least a very small risk" of identification. Certificates will now not only protect against compelled disclosure, but also render protected data inadmissible in legal proceedings without participant consent. In addition, voluntary disclosure is no longer authorized, but there is now a broad exception for disclosure as required by federal, state, and local laws. In this paper, based on our previous research on Certificates, we critically evaluate the 21st Century Cures Act's Certificates revisions and their positive and negative impact on the dual goals of facilitating important, sensitive research while maximally protecting individual research participants.

Children's perspectives on the benefits and burdens of research participation

ABSTRACTBackground: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. Methods: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. Results: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. Conclusions: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process.