Stephanie A. Kraft
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View article: Reflections from Research Roundtables at the Conference on Health, Inference, and Learning (CHIL) 2025
Reflections from Research Roundtables at the Conference on Health, Inference, and Learning (CHIL) 2025 Open
The 6th Annual Conference on Health, Inference, and Learning (CHIL 2025), hosted by the Association for Health Learning and Inference (AHLI), was held in person on June 25-27, 2025, at the University of California, Berkeley, in Berkeley, C…
View article: Revisiting the Obligation to Share Aggregate Results with Research Participants in the Era of Open Science
Revisiting the Obligation to Share Aggregate Results with Research Participants in the Era of Open Science Open
Open science initiatives, intended to democratize access to research products, have made steady progress in shifting the global science culture toward practices like preregistration and data sharing. However, current open science efforts h…
View article: When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research
When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research Open
Ethical tensions and logistical hurdles arise when considering CS that bridges research and clinical settings. Additional study of the appropriateness and feasibility of testing for relatives, especially in genomics in which distinctions b…
View article: Perspectives of Hispanic and Latinx Community Members on AI-Enabled mHealth Tools: Qualitative Focus Group Study
Perspectives of Hispanic and Latinx Community Members on AI-Enabled mHealth Tools: Qualitative Focus Group Study Open
Background Mobile health (mHealth) tools have the potential to reduce the burden of chronic conditions that disproportionately affect Hispanic and Latinx communities; however, digital divides in the access to and use of health technology s…
View article: Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data‐Sharing Landscape
Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data‐Sharing Landscape Open
Scientific data‐sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusi…
View article: “Treatable not curable”: trade-offs in the use of treatment-oriented language with patients who have incurable cancer
“Treatable not curable”: trade-offs in the use of treatment-oriented language with patients who have incurable cancer Open
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 inc…
View article: Developing a Resource for Supporting Community-Based Health Research: Towards Considerations for Advancing Equity in Mobile Health Technology
Developing a Resource for Supporting Community-Based Health Research: Towards Considerations for Advancing Equity in Mobile Health Technology Open
View article: Development of the Better Research Interactions for Every Family (BRIEF) intervention to support recruitment for neonatal clinical trials: an intervention mapping guided approach
Development of the Better Research Interactions for Every Family (BRIEF) intervention to support recruitment for neonatal clinical trials: an intervention mapping guided approach Open
Background Recruitment for neonatal clinical trials can be particularly challenging. Low enrollment rates bias the research population and decrease generalizability of findings. We identified a critical need for an intervention to improve …
View article: Community Perspectives on Artificial Intelligence-Enabled Mobile Health Tools: A Focus Group Study of Hispanic and Latinx Community Members (Preprint)
Community Perspectives on Artificial Intelligence-Enabled Mobile Health Tools: A Focus Group Study of Hispanic and Latinx Community Members (Preprint) Open
BACKGROUND Mobile health (mHealth) tools have potential to reduce the burden of chronic conditions that disproportionately affect Hispanic and Latinx communities, but digital divides in the access and use of health technology suggest that…
View article: Ethical considerations for respectful research participant payment processes
Ethical considerations for respectful research participant payment processes Open
Background: Researchers and research organizations acknowledge the importance of paying research participants but often overlook the process of providing participant payments as a locus for improving equity and inclusion in clinical resear…
View article: Improving Care for Marginalized Populations at Risk for Hereditary Cancer Syndromes: Innovations that Expanded Reach in the CHARM Study
Improving Care for Marginalized Populations at Risk for Hereditary Cancer Syndromes: Innovations that Expanded Reach in the CHARM Study Open
n/a (not required for this call for papers/type of article)
View article: Patient priorities for fulfilling the principle of respect in research: findings from a modified Delphi study
Patient priorities for fulfilling the principle of respect in research: findings from a modified Delphi study Open
View article: Conducting inclusive research in genetics for transgender, gender‐diverse, and sex‐diverse individuals: Case analyses and recommendations from a clinical genomics study
Conducting inclusive research in genetics for transgender, gender‐diverse, and sex‐diverse individuals: Case analyses and recommendations from a clinical genomics study Open
A person's phenotypic sex (i.e., endogenous expression of primary, secondary, and endocrinological sex characteristics) can impact crucial aspects of genetic assessment and resulting clinical care recommendations. In studies with genetics …
View article: Distinguishing Clinical and Research Risks in Pragmatic Clinical Trials: The Need for Further Stakeholder Engagement
Distinguishing Clinical and Research Risks in Pragmatic Clinical Trials: The Need for Further Stakeholder Engagement Open
Click to increase image sizeClick to decrease image sizeThis article is referred to by:Response to Open Peer Commentaries on “Think Pragmatically: Investigators’ Obligations to Patient-Subjects When Research is Embedded into Care”This arti…
View article: Equity Concerns Across Pediatric Research Recruitment: An Analysis of Research Staff Interviews
Equity Concerns Across Pediatric Research Recruitment: An Analysis of Research Staff Interviews Open
View article: Most people share genetic test results with relatives even if the findings are normal: Family communication in a diverse population
Most people share genetic test results with relatives even if the findings are normal: Family communication in a diverse population Open
View article: Centering Patients’ Voices in Artificial Intelligence‒Based Telemedicine
Centering Patients’ Voices in Artificial Intelligence‒Based Telemedicine Open
Centering Patients' Voices in Artificial Intelligence‒Based Telemedicine Stephanie A. Kraft JD Affiliation Stephanie A. Kraft is with the Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, and the Departmen…
View article: Better recognition for research participants: what society should learn from covid-19
Better recognition for research participants: what society should learn from covid-19 Open
Stephanie Kraft and colleagues argue that doing more to acknowledge the important role of research participants could help recruitment
View article: Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta
Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta Open
Objective Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how…
View article: Conducting clinical genomics research during the COVID-19 pandemic: Lessons learned from the CSER consortium experience
Conducting clinical genomics research during the COVID-19 pandemic: Lessons learned from the CSER consortium experience Open
Clinical research studies have navigated many changes throughout the COVID-19 pandemic. We sought to describe the pandemic′s impact on research operations in the context of a clinical genomics research consortium that aimed to enroll a maj…
View article: Refining a Multifaceted Model of Perceived Utility of Genomic Sequencing Results
Refining a Multifaceted Model of Perceived Utility of Genomic Sequencing Results Open
Introduction: Research on the perceived utility of genomic sequencing has focused primarily on pediatric populations and on individuals and families with rare genetic diseases. Here, we evaluate how well a multifaceted perceived utility mo…
View article: Conducting clinical genomics research during the <scp>COVID</scp>‐19 pandemic: Lessons learned from the <scp>CSER</scp> consortium experience
Conducting clinical genomics research during the <span>COVID</span>‐19 pandemic: Lessons learned from the <span>CSER</span> consortium experience Open
Clinical research studies have navigated many changes throughout the COVID‐19 pandemic. We sought to describe the pandemic′s impact on research operations in the context of a clinical genomics research consortium that aimed to enroll a maj…
View article: Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews
Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews Open
View article: Engaging Patient Advisory Committees to Inform a Genomic Cancer Risk Study: Lessons for Future Efforts
Engaging Patient Advisory Committees to Inform a Genomic Cancer Risk Study: Lessons for Future Efforts Open
Introduction The Cancer Health Assessments Reaching Many study seeks to reduce disparities in genomic care. Two patient advisory committees (PACs) were formed, 1 of English speakers and 1 of Spanish speakers, to vet study processes and mat…
View article: Lessons learned about publication of results of community surveys when regulatory oversight has not occurred
Lessons learned about publication of results of community surveys when regulatory oversight has not occurred Open
Background: We conducted a survey in an online forum without prior IRB approval which yielded information we wanted to share with the medical community. We sought approaches to ethically publish the survey's results. Objective: Address the…
View article: Toward Meeting the Obligation of Respect for Persons in Pragmatic Clinical Trials
Toward Meeting the Obligation of Respect for Persons in Pragmatic Clinical Trials Open
Research ethics oversight systems have traditionally emphasized the informed consent process as the primary means by which to demonstrate respect for prospective subjects. Yet how researchers can best fulfill the ethical obligations of res…
View article: Laboratory-related outcomes from integrating an accessible delivery model for hereditary cancer risk assessment and genetic testing in populations with barriers to access
Laboratory-related outcomes from integrating an accessible delivery model for hereditary cancer risk assessment and genetic testing in populations with barriers to access Open
View article: Corrigendum to “Cancer Health Assessments Reaching Many (CHARM): A clinical trial assessing a multimodal cancer genetics services delivery program and its impact on diverse populations” [Contemporary Clinical Trials 106 (2021) 106432]
Corrigendum to “Cancer Health Assessments Reaching Many (CHARM): A clinical trial assessing a multimodal cancer genetics services delivery program and its impact on diverse populations” [Contemporary Clinical Trials 106 (2021) 106432] Open
View article: Additional file 1 of Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews
Additional file 1 of Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews Open
Additional file 1. Interview guide questions by topic. Contains all questions in semi-structured interview guide utilized by interviewer (KFM).
View article: Additional file 3 of Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews
Additional file 3 of Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews Open
Additional file 3. Interviewee characteristics on per-cohort basis. Contains the information provided in Table 1, subdivided into the four cohorts described in this study.