Readability of Patient-reported Outcome Measures Used in Plastic Surgery.

Background: Patient-reported outcomes are essential to understanding success in plastic surgery procedures, many that aim to improve quality of life. Patient-reported outcome measures (PROMs) should be written at or below the sixth-grade reading level recommended by the American Medical Association. This study aimed to evaluate the readability of plastic surgery PROMs.

A Photo-Narrative Intervention for Children with Severe Neurological Impairment in the PICU.

Background: Parents of children with severe neurological impairment (SNI) face barriers in the pediatric intensive care unit (PICU) to humanistic care. Photo-narratives are a promising strategy to share perspectives about well-being. This study describes the iterative refinement and lessons learned in adapting a photo-narrative intervention for children with SNI in the PICU.

Parents' Experiences With and Preferences for Receiving Information About Tumor Genomic Sequencing: Findings From a Qualitative Study and Implications for Practice.

Purpose: The use of up-front tumor genomic sequencing (TGS) is becoming increasingly common in pediatric oncology. Despite this, little is known about how parents receive information about TGS at the time of their child's cancer diagnosis. We aimed to describe parents' experiences with and preferences for receiving information about TGS and to use these findings to inform practical guidance for pediatric oncology clinicians.

"Treatable not curable": trade-offs in the use of treatment-oriented language with patients who have incurable cancer.

Treatment-oriented language is used by physicians to convey to patients that treatment is available for their cancer (eg, "our usual treatment for this is…," "we can treat this," "your cancer is still treatable"). For patients who have incurable cancer, especially for patients with a poor prognosis or who are at the end of life, it is important to understand how physicians conceptualize and use this "everyday" clinical language. We conducted a qualitative interview study with a multidisciplinary group of physicians (n = 30) who may care for patients with cancer at different points in their clinical course, from diagnosis to end of life.

Schoolhouse risk: Can we mitigate the polygenic Pygmalion effect?

Background: Although limited in predictive accuracy, polygenic scores (PGS) for educational outcomes are currently available to the public via direct-to-consumer genetic testing companies. Further, there is a growing movement to apply PGS in educational settings via 'precision education.' Prior scholarship highlights the potentially negative impacts of such applications, as disappointing results may give rise a "polygenic Pygmalion effect.

Increasing Diversity, Equity, Inclusion, and Accessibility in Rare Disease Clinical Trials.

Diversity, equity, inclusion, and accessibility (DEIA) are foundational principles for clinical trials and medical research. In rare diseases clinical research, where numbers of participants are already challenged by rarity itself, maximizing inclusion is of particular importance to clinical trial success, as well as ensuring the generalizability and relevance of the trial results to the people affected by these diseases. In this article, we review the medical and gray literature and cite case examples to provide insights into how DEIA can be proactively integrated into rare diseases clinical research.

"Ethical Responsibility Very Often Gets Drowned Out": A Qualitative Interview Study of Genome Scientists' and ELSI Scholars' Perspectives on the Role and Relevance of ELSI Expertise.

Background: Genome scientists and Ethical, Legal, and Social Implications of genetics (ELSI) scholars commonly inhabit distinct research cultures - utilizing different research methods, asking different research questions, and valuing different types of knowledge. Collaborations between these two communities are frequently called for to enhance the ethical conduct of genomics research. Yet, little has been done to qualitatively compare genome scientists' and ELSI scholars' perspectives on collaborations with each other and the factors that may affect these collaborations.

Online communication skill training of patients with cancer: A test of the behavioral intention predictive framework for communication skills.

Objective: To assess the Behavioral Intention Predictive Framework's utility in explaining variation in cancer patients' strong behavioral intention (SBI) to use LEAPS (Listen, Educate, Assess, Partner, Support) communication skills after viewing training videos.

Methods: Ninety-eight patients were enrolled through anonymized online platforms to view LEAPS training videos, complete background and communication questionnaires and report their SBI to use LEAPS skills.

Results: On average, patients indicated SBI to use 6 of 13 skills and 46% of patients expressed SBI across individual skills.

Family communication of cancer genetic test results in an ethnically diverse population: a qualitative exploration of more than 200 patients.

Previous research on family communication of cancer genetic test results has primarily focused on non-Hispanic White patients with high-risk pathogenic variants (PV). There are limited data on patient communication of moderate-risk PVs, variants of uncertain significance (VUS), and negative results. This qualitative study examined communication of positive, negative, and VUS hereditary cancer multi-gene panel (MGP) results in an ethnically and socioeconomically diverse population.

Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars' Dissemination Practices and Translation Goals.

Background: Researchers engaged in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics are often publicly funded and intend their work to be in the public interest. These features of U.S.

Practical Approaches to Enhancing Fairness, Social Responsibility and the Inclusion of Diverse Viewpoints in Biomedicine.

The following sections are included:Workshop DescriptionLearning ObjectivesPresenter InformationAbout the Workshop OrganizersPresentationsSpeaker Presentations.

Physician Unionization: Opportunities and Challenges for Anesthesiologists in the United States.

Physician unionization is gaining traction in the United States, with <10% of practicing physicians now members, up from historically weak support. Factors that drive interest in unions include a decreased number of independent practitioners, an increase in workloads, and the erosion of autonomy. Approximately 56% of anesthesiologists are considered employees and may be eligible for union membership.

Healthcare and support experiences of adolescents and young adults diagnosed with 47,XXY, 47,XXX, and 48,XXYY.

Sex chromosome aneuploidies (SCAs) are among the most common chromosomal conditions. There is little scholarship on how adolescents and young adults (AYAs) affected by SCA engage with and adapt to their diagnosis. In order to understand how AYAs adapt to a SCA diagnosis, we conducted a secondary analysis of qualitative interviews with AYAs.

The right not to know: Non-disclosure of primary genetic test results and genetic counselors' response.

As part of clinical genetic counseling practice, patients may request that their primary genetic test results be disclosed to someone else, such as a relative or referring provider, or request that results be disclosed to no one (non-disclosure). In making these requests, patients employ the ethical principle of the "right not to know," which argues that autonomous individuals can choose not to know relevant health information. Although the right not to know has been well-studied in medicine in general, and in the return of genomic secondary findings, we are not aware of other studies that have explored the return of primary genetic test results when patients request non-disclosure or disclosure to another individual.

Ethical Aspects of Pediatric Genetic Care: Testing and Treatment.

Pediatric health care providers caring for patients and families with genetic disease will encounter a range of ethical issues. These include traditional pediatric health care issues, such as surrogate decision making and end-of-life care. Genetic testing raises the importance of informed consent for potential risks that move beyond the oft discussed physical risks and into longer term concepts such as psychological impact, privacy and potential discrimination.

Stronger regulation of AI in biomedicine.

Regulatory agencies need to ensure the safety and equity of AI in biomedicine, and the time to do so is now.

Beware of the phony horserace between genes and environments.

Although Burt provides a valuable critique of the scientific value of integrating genetic data into social science research, she reinforces rather than disrupts the age-old horserace between genetic effects and environmental effects. We must move past this false dichotomy to create a new ontology that recognizes the ways in which genetic and environmental processes are inextricably intertwined.