Benjamin S Wilfond, MD

Benjamin S Wilfond, MD

Bioethics Consultation Service, Pulmonary, Differences in Sex Development, Bronchopulmonary Dysplasia Program

On staff since July 2006

Children's Title: Investigator, Treuman Katz Center for Pediatric Bioethics and Palliative Care

Academic Title: Professor, Divisions of Bioethics and Palliative Care and Pulmonary and Sleep Medicine, Department of Pediatrics; Adjunct Professor, Department of Bioethics and Humanities, University of Washington School of Medicine

Research Center: Center for Clinical and Translational Research, Treuman Katz Center for Pediatric Bioethics and Palliative Care

"All doctors struggle with complex ethical issues, but I get the chance to talk with families and my colleagues to explore different perspectives and to think about those complex issues year after year. I love to share what I am learning, and I hope it helps us all make our journey in healthcare and in life more fulfilling."

  • Biography

    Benjamin S. Wilfond, MD, is an investigator at the Treuman Katz Center for Pediatric Bioethics and Palliative Care and a pulmonologist at Seattle Children's Hospital. He is a professor in the Divisions of Bioethics & Palliative Care and Pulmonary & Sleep Medicine, Department of Pediatrics, University of Washington School of Medicine. He founded and is former division chief of Bioethics and Palliative Care and former director of the Treuman Katz Center for Pediatric Bioethics and Palliative Care, the first such programs in the U.S.

    Dr. Wilfond is the research ethics case co-editor of the American Journal of Bioethics and on the editorial boards of the Hastings Center Report, Ethics and Human Research, and Journal of Genetic Counseling. He a is member of the FDA Pediatrics Advisory Committee and the Standing Committee on Ethics, Canadian Institutes of Health Research. He is an elected member of the American Pediatric Society and a fellow of the Hastings Center. He is a past president of the Association of Bioethics Program Directors. He founded and is the former chair of National Human Genome Research Institute intramural IRB, and founded and is the former chair of Clinical Research Ethics Consultation Collaborative, a national network to advance the practice of bioethics consultation in the research context.   

    Dr. Wilfond attended Muhlenberg College, Rutgers University-New Jersey Medical School, and completed his postgraduate training at the University of Wisconsin. He has held faculty appointments at the University of Arizona, National Institutes of Health and Johns Hopkins University.

    • Related Pages

    • Wilfond Lab

      Wilfond Lab

      The Wilfond lab seeks to better improve people's experiences navigating our social institutions and systems for providing health care and conducting clinical research and focus on ethical and policy issues related to disabilities, genetics, and clinical research.

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  • Publications

    Manuscripts in Refereed Journals

    • Benjamin S. Wilfond, MD
      Tracheostomies and Assisted Ventilation in Children with Profound Disabilities: Navigating Family and Professional Values
      Pediatrics, 2014 Feb. : 133(Supplement)S44-S49
    • Benjamin S. Wilfond, MD
      Quality Improvement Ethics: Lessons From the SUPPORT Study
      Am J Bioeth, 2013 Dec. : 13(12)14-19
    • Mann PC, Woodrum DE, Wilfond BS
      Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes
      J Pediatr, 2013 Aug. : 163(2)587-592
    • Wilfond, et al
      The OHRP and SUPPORT
      The New England journal of medicine, 2013 Jun 5
    • Beskow LM, Fullerton SM, Namey EE, Nelson DK, Davis AM, Wilfond BS
      Recommendations for ethical approaches to genotype-driven research recruitment.
      22622788 Human genetics, 2012 Sept. : 131(9)1423-31
    • Janvier A, Farlow B, Wilfond BS
      The experience of families with children with trisomy 13 and 18 in social networks.
      22826570 Pediatrics, 2012 Aug. : 130(2)293-8
    • Wilfond B
      Predicting our future: lessons from Winnie-the-Pooh.
      22777968 The Hastings Center report, 2012 July : 42(4)3
    • Wolf SM, Crock BN, Van Ness B, Lawrenz F, Kahn JP, Beskow LM, Cho MK, Christman MF, Green RC, Hall R, Illes J, Keane M, Knoppers BM, Koenig BA, Kohane IS, Leroy B, Maschke KJ, McGeveran W, Ossorio P, Parker LS, Petersen GM, Richardson HS, Scott JA, Terry SF, Wilfond BS, Wolf WA
      Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
      22436882 Genetics in medicine : official journal of the American College of Medical Genetics, 2012 April : 14(4)361-84

    Other Publications

    • Magnus D, Wilfond BS
      Research on medical practices and the ethics of disclosure.
      25583909 Pediatrics, 2015 Feb. : 135(2)208-10

  • Presentations

    Presentation Title Event Location Date
    Technological Interventions in Children with Profound Disabilities: Balancing Childrens Interests, Parental Preference, and Resource Constraint Program for Medical Ethics, Yale School of Medicine New Haven, CT Mar 26, 2012
    What Are the Psychosocial and Ethical Implications Associated with Sapropterin Response or non-response? Phenylketonuria Scientific Review Conference: State of the Science and Future Research Needs Bethesda, MD Feb 2, 2012
    Wisconsin Cystic Fibrosis Study and Undisclosed Findings: Unanticipated Findings in Newborn Screening NBSTRN Bioethics and Legal Issues Workgroup, American College of Medical Genetics Bethesda, MD Nov 3, 2011
    Transforming Clinical, Parental, and Society Discord About Disability: the Example of Trisomy 18 and 13 American Society of Bioethics and Humanities Annual Meeting Minneapolis, MN Oct 13, 2011
    Assent in Genomic Research: Should We Return Individual Research Results and Incidental Findings from Genomic Biobanks and Archives? University of Minnesota Bethesda, MD May 11, 2011
    What Does it mean to Get Assent From Children in Pediatric Biobank Genomic Research Pediatric Academic Society Meeting Denver, CO May 3, 2011
    Assent for Children Enrolling in Biobanks: Not "Consent" for Little Adults Exploring the ELSI Universe, NHGRI Chapel Hill, NC Apr 13, 2011

Overview

Medical/Professional School

University Of Medicine & Dentistry Of New Jersey, Newark, NJ

Residency

University of Wisconsin Hospitals and Clinics, Madison, WI

Fellowship

University of Wisconsin Hospitals and Clinics, Madison, WI

Clinical Interests

Dr. Wilfond retired from clinical practice in 2023. During his last decade in practice, he focused on the care for children with chronic lung disease related to prematurity, and followed families during their NICU stay and continued to care for them once they were home. Earlier in his career, he had a special interest in children and adults with cystic fibrosis, and children who required home mechanical ventilation. Wilfond was active in clinical ethics consultation from 1988-2023. He continues to be active in organizational ethics and research ethics consultation.

Research Description

For 35 years, Dr. Wilfond has engaged in social science research and conceptual scholarship related to ethical and policy issues at the research/clinical care interface. His current focus relates to improving family decisions regarding conditions that include neurocognitive disabilities, such as trisomy 13 and 18; regarding advanced technologies such as home mechanical ventilation and genetic therapies; and regarding pragmatic research conducted within the context of healthcare delivery systems.

Research Focus Area

Bioethics, research ethics, pediatric ethics, ethics and genetics, ethics and disabilities