Parental leave experiences for the non-childbearing general surgery resident parent: A qualitative analysis.

BACKGROUND: Stigma surrounds parental leave during general surgery residency, yet 25% to 29% of general surgery residents have children. Parental leave experiences of non-childbearing general surgery resident parents have not been described. This study aimed to describe the non-childbearing population's parental leave experiences. METHODS: Using a purposive sampling strategy, semi-structured interviews (n = 20) were conducted via Zoom (August 2021-March 2022) with current general surgery residents or fellows who had at least 1 child during residency as the non-childbearing parent. Interviews explored participants' experiences with parental leave policies, timing, structure, motivations/influences for taking leave, career/training impacts, and reflections on their experiences. Transcripts were analyzed using thematic content analysis. Participant demographics were analyzed using univariate analysis. RESULTS: Of the 20 participants, there were 31 unique parental leave experiences. The following 6 themes were identified from interviews: program/professional policies, cultural climate, support (institutional and social), parental leave experiences, impact, and recommendations. Participants cited needing to rely on informal support (eg, the assistance of other residents) to arrange leave and feeling compelled not to take the full time allowed in order to not burden co-residents or because others took less time. Overall, participants felt dissatisfied with their parental leave experiences. CONCLUSION: Non-childbearing general surgery resident parents underuse parental leave due to perceived or actual lack of access to leave and stigma. This results in dissatisfaction with their parental leave experiences and has the potential to lead to negative professional and personal outcomes. There is a critical need for improved support through cultural change and policy revision, implementation, and adherence.

Responsibility, culpability, and parental views on genomic testing for seriously ill children.

PURPOSE: We describe parental perceptions of and experiences with genomic sequencing (GS) in the care of seriously ill children. Understanding parents' perspectives is vital for clinicians caring for children, given the uptake of genomic technologies into clinical practice. METHODS: Longitudinal, semistructured interviews were conducted with parents of pediatric cancer patients who underwent exome sequencing (ES) as a part of the BASIC3 study. Interviews were conducted at baseline, one to eight months after results disclosure, and approximately one year after disclosure. Using thematic qualitative analysis, parent interviews were coded with both inductive and deductive approaches. RESULTS: Before receiving genomic information, parents indicated that they saw ES as something responsible parents would agree to if their child had cancer. Some parents talked about the possibility of sequencing affecting feelings of culpability for their child's cancer, worrying that they passed on a cancer-causing gene or made parenting decisions that caused the disease. However, after receiving their child's ES results many reported feeling relieved of guilt and worry, and felt they had fulfilled parental duties by agreeing to ES for their child. CONCLUSION: These results reveal a layer of meaning that parents associate with GS that may inform clinicians' approach to care.

Agents of empathy: How medical interpreters bridge sociocultural gaps in genomic sequencing disclosures with Spanish-speaking families.

OBJECTIVES: To describe how linguistic tools used by interpreters during return of genomic sequencing results may have impacted communication with Spanish-speaking families, and to discuss the implications for the role of medical interpreters. METHODS: Using discourse analysis, we identified and categorized the various ways hospital-based interpreters adapted clinicians' language in 37 audio-recorded sessions in which Spanish-speaking parents participating in a clinical trial received their child's genomic sequencing results from English-speaking clinicians. RESULTS: We found that interpreters adapted clinicians' statements using five empathic linguistic tools: contextualization, encouragement, checking comprehension, endearment, and softening. Interpreters used an average of four linguistic tools per session, with contextualization and encouragement being the most frequently used. CONCLUSIONS: Interpreters used empathic linguistic tools to alter clinicians' statements when communicating genomic information to Spanish-speaking families. Our findings demonstrate the critical role of interpreters as cultural mediators and facilitators of understanding for Spanish-speaking families. PRACTICE IMPLICATIONS: This study expands upon the definition of clinical empathy in interpreter-mediated sessions. Our findings suggest that revisions of standards of medical interpretation practice may be warranted regarding interpreters' ability to adapt clinicians' language in a culturally sensitive manner during interpretation.

When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing.

BACKGROUND: Clinical genome and exome sequencing (CGES) is being used in an expanding range of clinical settings. Most approaches to offering patients choices about learning CGES results classify results according to expert definitions of clinical actionability. Little is known about how patients conceptualize different categories of CGES results. METHODS: The MedSeq Project is a randomized controlled trial studying the use of whole-genome sequencing (WGS) in primary care and cardiology. We surveyed 202 patient-participants about different kinds of WGS results and conducted qualitative interviews with 49 of these participants. Interview data were analyzed both inductively and deductively using thematic content analysis. RESULTS: Participants demonstrated high levels of study understanding and genetic literacy. A small majority of participants wanted to learn all of their WGS results (n = 123, 61%). Qualitative data provided a deeper understanding of participants' perspectives about different types of WGS results. Participants did not have the same views about which WGS results would be actionable or upsetting to learn. They conceptualized variants of uncertain significance (VUS) in a variety of different ways. Many participants expressed optimism that the uncertainty associated with VUS results could be reduced over time. CONCLUSIONS: Proposals to determine which WGS/CGES results to disclose by soliciting patient preferences may fail to appreciate the complex ways patients think about disease and the information WGS/CGES can produce. Our findings challenge prevailing methods of facilitating patient choice and assessing the benefits and harms related to the return of WGS/CGES results, which mostly rely on expert definitions of clinical utility to categorize the kinds of results patients can learn.

Portero versus portador: Spanish interpretation of genomic terminology during whole exome sequencing results disclosure.

AIM: Describe modifications to technical genomic terminology made by interpreters during disclosure of whole exome sequencing (WES) results. PATIENTS & METHODS: Using discourse analysis, we identified and categorized interpretations of genomic terminology in 42 disclosure sessions where Spanish-speaking parents received their child's WES results either from a clinician using a medical interpreter, or directly from a bilingual physician. RESULTS: Overall, 76% of genomic terms were interpreted accordantly, 11% were misinterpreted and 13% were omitted. Misinterpretations made by interpreters and bilingual physicians included using literal and nonmedical terminology to interpret genomic concepts. CONCLUSION: Modifications to genomic terminology made during interpretation highlight the need to standardize bilingual genomic lexicons. We recommend Spanish terms that can be used to refer to genomic concepts.

Parental Perspectives on Whole Exome Sequencing in Pediatric Cancer: A Typology of Perceived Utility.

PURPOSE: To explore how parents of pediatric cancer patients perceived the utility of clinical tumor and germline whole-exome sequencing (WES) results. PATIENTS AND METHODS: We conducted longitudinal interviews with parents of a diverse pediatric cancer population before disclosure of WES results (n=64), then one to eight months (n=33) after disclosure. Interview transcripts were analyzed using a thematic qualitative approach. RESULTS: Parents identified a broad range of types of utility for their child's WES results. Even when results did not affect their child's current treatment, they expressed optimism about future clinical utility for their child, themselves, and other family members. Parents also reported experiencing psychological utility including peace of mind, relief of guilt, and satisfaction of curiosity. Pragmatic utility, such as the ability to plan for the future and make better reproductive decisions, was also described. CONCLUSION: Parents of pediatric cancer patients perceive WES to have broad utility, including psychological and pragmatic utility, even if there is no direct impact on clinical care. Further work will need to consider how the value of genomic information should be characterized, how risks and benefits should be described, and how these results should inform recommendations and decisions about using WES.

Is Whole-Exome Sequencing an Ethically Disruptive Technology? Perspectives of Pediatric Oncologists and Parents of Pediatric Patients With Solid Tumors.

BACKGROUND: It has been anticipated that physician and parents will be ill prepared or unprepared for the clinical introduction of genome sequencing, making it ethically disruptive. PROCEDURE: As a part of the Baylor Advancing Sequencing in Childhood Cancer Care study, we conducted semistructured interviews with 16 pediatric oncologists and 40 parents of pediatric patients with cancer prior to the return of sequencing results. We elicited expectations and attitudes concerning the impact of sequencing on clinical decision making, clinical utility, and treatment expectations from both groups. Using accepted methods of qualitative research to analyze interview transcripts, we completed a thematic analysis to provide inductive insights into their views of sequencing. RESULTS: Our major findings reveal that neither pediatric oncologists nor parents anticipate sequencing to be an ethically disruptive technology, because they expect to be prepared to integrate sequencing results into their existing approaches to learning and using new clinical information for care. Pediatric oncologists do not expect sequencing results to be more complex than other diagnostic information and plan simply to incorporate these data into their evidence-based approach to clinical practice, although they were concerned about impact on parents. For parents, there is an urgency to protect their child's health and in this context they expect genomic information to better prepare them to participate in decisions about their child's care. CONCLUSIONS: Our data do not support the concern that introducing genome sequencing into childhood cancer care will be ethically disruptive, that is, leave physicians or parents ill prepared or unprepared to make responsible decisions about patient care.

It depends whose data are being shared: considerations for genomic data sharing policies.

There is an urgent need for consistent data sharing policies that promote the advancement of science while respecting the values and interests of those providing their genetic data for research. Responding to the article of Jalayne J. Arias, Genevieve Pham-Kanter, and Eric G. Campbell, 'The Growth and Gaps of Genetic Data Sharing Policies in the United States', this commentary further explores the challenges of human subjects' protection in existing data sharing policies. We will elaborate on the need for data sharing policies to accommodate variation in individual and group preferences around data sharing and privacy concerns by comparing our previously published data on patients' and parents' consent to data sharing and attitudes about privacy to data from focus groups with HIV-positive, underserved individuals who were asked about their willingness to participate in genetic research and share their data broadly. These studies support the observation of Arias, Pham-Kanter, and Campbell that researchers, and funding agencies will need to balance the privacy interests of groups as well as individuals in future genomic data sharing policies.

'Someday it will be the norm': physician perspectives on the utility of genome sequencing for patient care in the MedSeq Project.

AIM: To describe practicing physicians' perceived clinical utility of genome sequencing. MATERIALS & METHODS: We conducted a mixed-methods analysis of data from 18 primary care physicians and cardiologists in a study of the clinical integration of whole-genome sequencing. Physicians underwent brief genomics continuing medical education before completing surveys and semi-structured interviews. RESULTS: Physicians described sequencing as currently lacking clinical utility because of its uncertain interpretation and limited impact on clinical decision-making, but they expressed the idea that its clinical integration was inevitable. Potential clinical uses for sequencing included complementing other clinical information, risk stratification, motivating patient behavior change and pharmacogenetics. CONCLUSION: Physicians given genomics continuing medical education use the language of both evidence-based and personalized medicine in describing the utility of genome-wide testing in patient care.

Participants' recall and understanding of genomic research and large-scale data sharing.

As genomic researchers are urged to openly share generated sequence data with other researchers, it is important to examine the utility of informed consent documents and processes, particularly as these relate to participants' engagement with and recall of the information presented to them, their objective or subjective understanding of the key elements of genomic research (e.g., data sharing), as well as how these factors influence or mediate the decisions they make. We conducted a randomized trial of three experimental informed consent documents (ICDs) with participants (n = 229) being recruited to genomic research studies; each document afforded varying control over breadth of release of genetic information. Recall and understanding, their impact on data sharing decisions, and comfort in decision making were assessed in a follow-up structured interview. Over 25% did not remember signing an ICD to participate in a genomic study, and the majority (54%) could not correctly identify with whom they had agreed to share their genomic data. However, participants felt that they understood enough to make an informed decision, and lack of recall did not impact final data sharing decisions or satisfaction with participation. These findings raise questions about the types of information participants need in order to provide valid informed consent, and whether subjective understanding and comfort with decision making are sufficient to satisfy the ethical principle of respect for persons.

"Snake-oil," "quack medicine," and "industrially cultured organisms:" biovalue and the commercialization of human microbiome research.

BACKGROUND: Continued advances in human microbiome research and technologies raise a number of ethical, legal, and social challenges. These challenges are associated not only with the conduct of the research, but also with broader implications, such as the production and distribution of commercial products promising maintenance or restoration of good physical health and disease prevention. In this article, we document several ethical, legal, and social challenges associated with the commercialization of human microbiome research, focusing particularly on how this research is mobilized within economic markets for new public health uses. METHODS: We conducted in-depth, semi-structured interviews (2009-2010) with 63 scientists, researchers, and National Institutes of Health project leaders ("investigators") involved with human microbiome research. Interviews explored a range of ethical, legal, and social dimensions of human microbiome research, including investigators' perspectives on commercialization. Using thematic content analysis, we identified and analyzed emergent themes and patterns. RESULTS: Investigators discussed the commercialization of human microbiome research in terms of (1) commercialization, probiotics, and issues of safety, (2) public awareness of the benefits and risks of dietary supplements, and (3) regulation. CONCLUSION: The prevailing theme of ethical, legal, social concern focused on the need to find a balance between the marketplace, scientific research, and the public's health. The themes we identified are intended to serve as points for discussions about the relationship between scientific research and the manufacture and distribution of over-the-counter dietary supplements in the United States.

Perspectives on human microbiome research ethics.

Study of ethical, legal, and social implications (ELSI) of human microbiome research has been integral to the Human Microbiome Project (HMP). This study explores core ELSI issues that arose during the first phase of the HMP from the perspective of individuals involved in the research. We conducted semi-structured in-depth interviews with investigators and NIH employees ("investigators") involved in the HMP, and with individuals recruited to participate in the HMP Healthy Cohort Study at Baylor College of Medicine ("recruits"). We report findings related to three major ELSI issues: informed consent, data sharing, and return of results. Our findings demonstrate that investigators and recruits were similarly sensitive to these issues yet generally comfortable with study design in light of current knowledge about the microbiome.

To share or not to share: a randomized trial of consent for data sharing in genome research.

PURPOSE: Despite growing concerns toward maintaining participants' privacy, individual investigators collecting tissue and other biological specimens for genomic analysis are encouraged to obtain informed consent for broad data sharing. Our purpose was to assess the effect on research enrollment and data sharing decisions of three different consent types (traditional, binary, or tiered) with varying levels of control and choices regarding data sharing. METHODS: A single-blinded, randomized controlled trial was conducted with 323 eligible adult participants being recruited into one of six genome studies at Baylor College of Medicine in Houston, Texas, between January 2008 and August 2009. Participants were randomly assigned to one of three experimental consent documents (traditional, n = 110; binary, n = 103; and tiered, n = 110). Debriefing in follow-up visits provided participants a detailed review of all consent types and the chance to change data sharing choices or decline genome study participation. RESULTS: Before debriefing, 83.9% of participants chose public data release. After debriefing, 53.1% chose public data release, 33.1% chose restricted (controlled access database) release, and 13.7% opted out of data sharing. Only one participant declined genome study participation due to data sharing concerns. CONCLUSION: Our findings indicate that most participants are willing to publicly release their genomic data; however, a significant portion prefers restricted release. These results suggest discordance between existing data sharing policies and participants' judgments and desires.

Physical aggression, forced sex, and stalking victimization by a dating partner: an analysis of the National Violence Against Women Survey.

This study used the National Violence Against Women Survey (NVAWS) of women and men to estimate noncohabitating dating violence prevalence by type (physical, forced sex, and stalking), associations between dating violence and other types of interpersonal violence across the lifespan, and association of dating violence with longer-term mental health including substance abuse. Among respondents aged 18 to 65, 8.3% of 6,790 women and 2.4% of 7,122 men experienced physical aggression, forced sex, or stalking victimization by a dating partner. Few (20.6% of women and 9.7% of men) reported more than one type of dating violence. Childhood physical aggression by a parent or guardian was strongly associated with subsequent dating violence risk for men and women. Dating violence (physical aggression specifically) was associated with current depressive symptoms, current therapeutic drug use (antidepressants, tranquilizers, or pain medications), and current recreation drug use for women. Implications for parents, survivors, health care, and service providers are discussed.