Publications by authors named "Benjamin Wilfond"

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Caregiver Perspectives on Racism and Bias in Navigating the Care of Children with Long-Term Ventilation via Tracheostomy.
Holly Hòa Võ, Kareena Patel, Cyndy Snyder, William N Sveen, Marcia Hancock, Benjamin S Wilfond

J Pediatr· December 2025

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Training competencies and recommendations for the next generation of public health genetics: Reflections from current leaders in the field.
Diane Xue, Elizabeth E Blue, Stephanie M Fullerton, Nora B Henrikson, Sarah Knerr, Benjamin S Wilfond

Am J Hum Genet· December 2025

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PRenatal mOdulator treatment to PrEvent CF complicaTions (PROTECT) workshop report.
Sylvia Szentpetery, Dara Riva, Yair J Blumenfeld, John F Engelhardt, Carmen Luna-Paredes, Benjamin S Wilfond

J Cyst Fibros· November 2025

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Anticipation of a therapeutic odyssey following predictive testing for autism.
Katherine E MacDuffie, Aurora M Washington, Catherine A Burrows, Stephen R Dager, Jed T Elison, Benjamin S Wilfond

Sci Rep· November 2025

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Delivery of Elexacaftor/Tezacaftor/Ivacaftor (ETI) Through Placenta and Then Breastmilk in Cystic Fibrosis: A Clinical Trial Risk-Benefit Analysis.
Liza Dawson, Benjamin S Wilfond, Andrew Doffie Ray, Liza-Marie Johnson

Am J Bioeth· October 2025

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Patient-initiated lifestyle changes following receipt of genetic test results in a predominantly marginalized population.
Marian J Gilmore, Hannah E Frawley, Elizabeth Shuster, Joanna E Bulkley, Kristin R Muessig, Benjamin S Wilfond

J Genet Couns· October 2025

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Disentangling informing participants from obtaining their consent.
Patricia Pearl O'Rourke, Joseph Ali, Judith Carrithers, David Magnus, Benjamin S Wilfond

Learn Health Syst· October 2025

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Parental Communication With their Children about Cancer Risk and DTC Cascade Genetic Testing: Implications for Genetic Education and Counseling.
Marcelo M Sleiman, Talia Zamir, Beth N Peshkin, Jada G Hamilton, Mingqian Liu, Benjamin Wilfond

Am J Med Genet A· September 2025

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"Now I have to act on that": Parent anticipation of a therapeutic odyssey following predictive testing for autism.
Katherine E MacDuffie, Aurora M Washington, Catherine A Burrows, Stephen R Dager, Jed T Elison, Benjamin S Wilfond

Res Sq· September 2025

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Revisiting the Obligation to Share Aggregate Results with Research Participants in the Era of Open Science.
Katherine E MacDuffie, Benjamin S Wilfond, Stephanie A Kraft

Ethics Hum Res· July 2025

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When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research.
Katherine E Bonini, Lauren R Desrosiers-Battu, Ann Katherine M Foreman, Nuriye N Sahin-Hodoglugil, Mary A Majumder, Benjamin S Wilfond

Genet Med Open· June 2025

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Ethical considerations for sharing aggregate results from pragmatic clinical trials.
Stephanie R Morain, Abigail Brickler, Joseph Ali, Patricia Pearl O'Rourke, Kayte Spector-Bagdady, Benjamin Wilfond

Clin Trials· April 2025

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Towards better enrollment decision-making for perinatal clinical research: Reconsidering recruitment and consent processes to support family values and preferences.
Elliott Mark Weiss, Benjamin S Wilfond, Stephanie A Kraft

Semin Perinatol· April 2025

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Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents.
Madison K Kilbride, Beth N Peshkin, Jada G Hamilton, Jamie Brower, Hannah Ovadia, Benjamin S Wilfond

Public Health Genomics· February 2025

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Perspectives of Hispanic and Latinx Community Members on AI-Enabled mHealth Tools: Qualitative Focus Group Study.
Stephanie A Kraft, Shaan Chopra, Miriana C Duran, Janet A Rojina, Abril Beretta, Benjamin S Wilfond

J Med Internet Res· February 2025

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Candidacy Decisions for Long-term Ventilation.
Holly Hoa Vo, Duncan Keegan, William N Sveen, Benjamin S Wilfond, Georgina Campelia

Pediatrics· December 2024

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Listening to patients and parents with sickle cell disease: the totality of gene therapy risks may outweigh the perceived benefits.
Liza-Marie Johnson, Akshay Sharma, Yvonne Carroll, Dominique Goodson, Belinda N Mandrell, Benjamin S Wilfond

Blood Adv· November 2024

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Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for adult screening.
Hadley Stevens Smith, Caryn Kseniya Rubanovich, Jill Oliver Robinson, Ariel N Levchenko, Sarah A Classen, Benjamin S Wilfond

Genet Med· November 2024

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Ethical considerations for respectful research participant payment processes.
Devan M Duenas, Elliott Mark Weiss, Benjamin S Wilfond, Stephanie A Kraft

J Clin Transl Sci· November 2024

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Disclosing Interim Results to Parents Offered Enrollment in a Fetal Intervention Trial.
Andrew D Ray, Liza Dawson, Benjamin S Wilfond, Liza-Marie Johnson

Am J Bioeth· October 2024

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Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing.
Hadley Stevens Smith, Caryn Kseniya Rubanovich, Jill Oliver Robinson, Ariel N Levchenko, Sarah A Classen, Benjamin S Wilfond

Genet Med· August 2024

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Parent attitudes towards predictive testing for autism in the first year of life.
Aurora M Washington, Amanda H Mercer, Catherine A Burrows, Stephen R Dager, Jed T Elison, Benjamin Wilfond

J Neurodev Disord· August 2024

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Perspectives of pediatric oncologists on referral for CAR-T therapy: a mixed methods pilot study.
Anurekha G Hall, Devan M Duenas, Jenna Voutsinas, Qian Wu, Adam J Lamble, Benjamin Wilfond

JNCI Cancer Spectr· July 2024

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Feasibility of an electronic patient-facing cancer family history tool in medically underserved populations.
Heather Spencer Feigelson, Kathleen F Mittendorf, Sonia Okuyama, Kathryn M Porter, Joanna Bulkley, Benjamin S Wilfond

Genet Med Open· June 2024

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Advancing genomics to improve health equity.
Ebony B Madden, Lucia A Hindorff, Vence L Bonham, Tabia Henry Akintobi, Esteban G Burchard, Benjamin S Wilfond

Nat Genet· May 2024

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