The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

Richard Thaler and Cass Sunstein define a nudge as “any aspect of the choice architecture that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives.” Much has been written about the ethics of nudging competent adult patients. Less has been written about the ethics of nudging surrogates’ decision‐making and how the ethical considerations and arguments in that context might differ. Even less has been written about nudging surrogate decision‐making in the context of (...) pediatrics, despite fundamental differences that exist between the pediatric and adult contexts. Yet, as the field of behavioral economics matures and its insights become more established and well‐known, nudges will become more crafted, sophisticated, intentional, and targeted. Thus, the time is now for reflection and ethical analysis regarding the appropriateness of nudges in pediatrics. We argue that there is an even stronger ethical justification for nudging in parental decision‐making than with competent adult patients deciding for themselves. We give three main reasons in support of this: (1) child patients do not have autonomy that can be violated (a concern with some nudges), and nudging need not violate parental decision‐making authority; (2) nudging can help fulfill pediatric clinicians’ obligations to ensure parental decisions are in the child's interests, particularly in contexts where there is high certainty that a recommended intervention is low risk and of high benefit; and (3) nudging can relieve parents’ decisional burden regarding what is best for their child, particularly with decisions that have implications for public health. (shrink)

As a well-established service offered at many hospitals internationally, clinical ethics consultation (CEC) is increasingly recognized as a tool to improve patient care quality (Fox et al. 2022; Ta...

Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents’ perceptions of their child’s projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to consider the appropriateness of (...) parental refusal based upon an infant’s projected quality of life. (shrink)

I have Crohn's disease. This essay is about how my experiences with this disease have shaped my perceptions of boundaries in medicine, particularly around the issue of self‐disclosure. I became a pediatrician first, then a parent, and now a patient, and with each new role, I have become increasingly confused on where boundaries regarding self‐disclosures in medicine lie. I'd like to make the case for more of a reframing and a blurring of personal and professional boundaries regarding physicians’ disclosures about (...) their own health. Although historically thought of as a way to strengthen the physician‐patient relationship and therefore encouraged, physician disclosure has recently become more controversial, and boundary discussions that include it seem to increasingly begin from the edict, “Don't do it.” But why not capitalize on the shared experience of physicians and patients? It offers an opportunity to deepen our therapeutic relationship with our patients, to build trust, to help understanding, and maybe even to improve patient outcomes. (shrink)

Parental confidence in vaccines is waning. To sustain and improve childhood vaccine coverage rates, insights from multiple disciplines are needed to understand and address the socio-cultural factors contributing to decreased vaccine confidence and uptake.