Benjamin S. Wilfond
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View article: “Now I have to act on that”: Parent anticipation of a therapeutic odyssey following predictive testing for autism
“Now I have to act on that”: Parent anticipation of a therapeutic odyssey following predictive testing for autism Open
View article: PRenatal mOdulator treatment to PrEvent CF complicaTions (PROTECT) workshop report
PRenatal mOdulator treatment to PrEvent CF complicaTions (PROTECT) workshop report Open
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: Environmental Health Risk Assessment and Management: Community Engagement for Water Reuse Technologies
Environmental Health Risk Assessment and Management: Community Engagement for Water Reuse Technologies Open
While there is an emerging consensus among scholars, academic researchers, and environmental advocates that community engagement is essential for effective environmental health risk assessment and management, robust engagement does not occ…
View article: Environmental Health Risk Assessment and Management: Community Engagement for Water Reuse Technologies
Environmental Health Risk Assessment and Management: Community Engagement for Water Reuse Technologies Open
While there is an emerging consensus among scholars, academic researchers, and environmental advocates that community engagement is essential for effective environmental health risk assessment and management, robust engagement does not occ…
View article: Parental Communication With their Children about Cancer Risk and DTC Cascade Genetic Testing: Implications for Genetic Education and Counseling
Parental Communication With their Children about Cancer Risk and DTC Cascade Genetic Testing: Implications for Genetic Education and Counseling Open
Cascade genetic testing for cancer risk can influence relatives' health outcomes, as they may benefit from risk reduction and screening. However, clinical guidelines discourage predictive genetic testing in childhood—including direct‐to‐co…
View article: Disentangling informing participants from obtaining their consent
Disentangling informing participants from obtaining their consent Open
Introduction Pragmatic clinical trials conducted in the context of routine care frequently satisfy the regulatory criteria for a waiver of research consent. When they do, investigators and Institutional Review Boards might assume that ther…
View article: Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents
Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents Open
Introduction Despite guidelines discouraging pediatric genetic testing for adult-onset hereditary cancer risk, direct-to-consumer (DTC) companies make them available to children’s parents. This study examined the perspectives of high-risk …
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: Ethical considerations for sharing aggregate results from pragmatic clinical trials
Ethical considerations for sharing aggregate results from pragmatic clinical trials Open
A growing literature has explored the ethical obligations and current practices related to sharing aggregate results with research participants. However, no prior work has examined these issues in the context of pragmatic clinical trials. …
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: Parent attitudes towards predictive testing for autism in the first year of life
Parent attitudes towards predictive testing for autism in the first year of life Open
View article: Perspectives of pediatric oncologists on referral for CAR-T therapy: a mixed methods pilot study
Perspectives of pediatric oncologists on referral for CAR-T therapy: a mixed methods pilot study Open
Background Receipt of chimeric antigen receptor T-cell (CAR-T) therapy at an institution different from the primary oncologist’s institution is a complex, multistep process. Referral by oncologists plays an important role in the process bu…
View article: Listening to patients and parents with sickle cell disease: the totality of gene therapy risks may outweigh the perceived benefits
Listening to patients and parents with sickle cell disease: the totality of gene therapy risks may outweigh the perceived benefits Open
View article: The companion dog as a model for inflammaging: a cross-sectional pilot study
The companion dog as a model for inflammaging: a cross-sectional pilot study Open
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: Advancing genomics to improve health equity
Advancing genomics to improve health equity Open
View article: Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing
Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing Open
View article: Evaluation of mailed results versus telephone disclosure of normal cancer genetic test results in a low-risk underserved population
Evaluation of mailed results versus telephone disclosure of normal cancer genetic test results in a low-risk underserved population Open
Scalable models for result disclosure are needed to ensure large-scale access to genomics services. Research evaluating alternatives to genetic counseling suggests effectiveness; however, it is unknown whether these findings are generaliza…
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: Feasibility of an electronic patient-facing cancer family history tool in medically underserved populations
Feasibility of an electronic patient-facing cancer family history tool in medically underserved populations Open
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
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View article: Experiences and preferences for learning about neonatal research: insights from parent interviews
Experiences and preferences for learning about neonatal research: insights from parent interviews Open
View article: Table of Contents
Table of Contents Open
View article: Risk management actions following genetic testing in the Cancer Health Assessments Reaching Many (<scp>CHARM</scp>) Study: A prospective cohort study
Risk management actions following genetic testing in the Cancer Health Assessments Reaching Many (<span>CHARM</span>) Study: A prospective cohort study Open
Background Genetic testing can identify cancer risk early, enabling prevention and early detection. We describe use of risk management interventions following genetic testing in the Cancer Health Assessment Reaching Many (CHARM) study. CHA…
View article: Longitudinal adherence to breast cancer surveillance following cancer genetic testing in an integrated health care system
Longitudinal adherence to breast cancer surveillance following cancer genetic testing in an integrated health care system Open
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: 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: Donor perspectives on informed consent and use of biospecimens for brain organoid research
Donor perspectives on informed consent and use of biospecimens for brain organoid research Open