Benjamin S. Wilfond, MD

Bioethics Consultation Service, Pulmonary, Differences in Sex Development

On staff since July 2006

Children's Title: Director, Treuman Katz Center for Pediatric Bioethics

Academic Title: Professor and Chief, Division of Bioethics; Professor, 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

"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."

  • Benjamin S. Wilfond, MD, is the director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and professor and chief of the Division of Bioethics in the Department of Pediatrics at the University of Washington School of Medicine. He is also adjunct professor in the Department of Bioethics and Humanities.

    Dr. Wilfond is the chief of the Bioethics Consultation Service and attends in the Chest Clinic in the Division of Pulmonary Medicine. He is member of the Institute of Translational Health Sciences (ITHS) Steering Committee and coordinates the ITHS Research Bioethics Consult Service. He earned his MD from the Rutgers University-New Jersey Medical School. He completed his pediatric residency and his fellowship in pediatric pulmonology and medical ethics at the University of Wisconsin. He has held faculty appointments at the University of Arizona, National Institutes of Health and Johns Hopkins University.

    He conducts research on ethical and policy issues related to genetic testing, genetic research and pediatrics research. He has recently worked on issues related to newborn screening, disclosure of genetic research results, pediatric biobanks and children with disabilities. He is the past president of the Association of Bioethics Program directors and the chair for the Clinical Research Ethics Consultation Collaborative affialiated with the Clinical and Translational Science Awards program.

  • Manuscripts in Refereed Journals

    • Benjamin S. Wilfond, MD
      Phenylketonuria Scientific Review Conference: State of the Science and Future Research Needs
      Molecular Genetics and Metabolism, 2014 June : 112(2)87-122
    • Benjamin S. Wilfond, MD
      Assent in Research: the Voices of Adolescents
      J Adolescent Medicine, 2014 May : 54(5)515-20
    • Benjamin S. Wilfond, MD
      Accepting Brain Death
      N Engl J Med, 2014 March 6 : 370891-94
    • Benjamin S. Wilfond, MD
      Our Children Are Not a Diagnosis: The Experience of Parents Who Continue Their Pregnancy After a Prenatal Diagnosis of Trisomy 13 or 18
      Am J Med Genet A, 2014 Feb. : 164(2)308-18
    • 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
      Parental permission for pilot newborn screening research: guidelines from the NBSTRN
      Pediatrics, 2014 Feb. : 133(2)e410-7
    • Benjamin S. Wilfond, MD
      Quality Improvement Ethics: Lessons From the SUPPORT Study
      Am J Bioeth, 2013 Dec. : 13(12)14-19
    • Wilfond
      Oxygen and Estrogen
      Hastings Center Report, 2013 Nov. : 43(6)
    • Benjamin S. Wilfond, MD
      The ethics of contacting family members of a subject in a genetic research study to return results for an autosomal dominant syndrome
      Am J Bioeth, 2013 Oct. : 13(10)61
    • Benjamin S. Wilfond, MD
      Challenging Cases in Research Ethics
      Am J Bioeth, 2013 Oct. : 13(10)60
    • Benjamin S. Wilfond, MD
      Managing disclosure of research misconduct by a graduate student to a university mental health professional during a clinical counseling session
      Am J Bioeth, 2013 Oct. : 13(10)68
    • Wilfond
      Recommendations for returning genomic incidental findings? We need to talk!
      Genet Med, 2013 Aug. : 15(11)85459
    • Wilfond
      Growing Up in the Genomic Era: Implications of Whole-Genome Sequencing for Children, Families and Pediatric Practice
      Annu Rev Genomics Hum Genet, 2013 Aug. : 14535-55
    • 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
      Enhancing Children Against Unhealthy Behaviors An Ethical and Policy Assessment of Using a Nicotine Vaccine
      Public Health Ethics, 2013 July : 6(2)197-206
    • Wilfond, et all
      The OHRP and SUPPORT
      The New England journal of medicine, 2013 June 5
    • Doorenbos AZ, Starks H, Bourget E, McMullan DM, Lewis-Newby M, Rue TC, Lindhorst T, Aisenberg E, Oman N, Curtis JR, Hays And The Seattle Ethics In Ecls See Consortium Jonna D Clark Md Ma Harris P Baden Md Thomas V Brogan Md Jane L Di Gennaro Md Robert Mazor Md Joan S Roberts Md Jessica Turnbull Md And Benjamin S Wilfond Md
      Examining Palliative Care Team Involvement in Automatic Consultations for Children on Extracorporeal Life Support in the Pediatric Intensive Care Unit
      J Palliat Med, 2013 May 13 : 16(5)492-95
    • Melvin AJ, Edwards K, Malone J, Hassell L, Wilfond BS
      Role for CTSAs in Leveraging a Distributed Research Infrastructure to Engage Diverse Stakeholders in Emergent Research Policy Development
      Clin Transl Sci, 2013 Feb. : 6(1)57-9
    • Rosen D, Wilfond B, Lantos JD
      Obstructive Sleep Apnea in a 17-Year-Old With Profound Cognitive Impairment
      Pediatrics, 2013 Feb. : 131(3)581-5
    • 85. McCormick JB, Sharp RR, Ottenberg AL, Reider CR, Taylor HA, Wilfond BS
      The Establishment of Research Ethics Consultation Services (RECS): An Emerging Research Resource
      Clin Transl Sci, 2013 Feb. : 6(1)40-4
    • Mai PL, Malkin D, Garber JE, Schiffman JD, Weitzel JN, Strong LC, Wyss O, Locke L, Means V, Achatz MI, Hainaut P, Frebourg T, Evans DG, Bleiker E, Patenaude A, Schneider K, Wilfond B, Peters JA, Hwang PM, Ford J, Tabori U, Ognjanovic S, Dennis PA, Wentzensen IM, Greene MH, Fraumeni JF Jr, Savage SA.
      Li-Fraumeni Syndrome: Report of a Clinical Research Workshop and Creation of a Research Consortium
      Cancer Genet, 2012 Oct. : 205(10)479-87
    • 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
    • Wilfond BS, Diekema DS
      Engaging children in genomics research: decoding the meaning of assent in research.
      22323071 Genetics in medicine : official journal of the American College of Medical Genetics, 2012 April : 14(4)437-43
    • Tabor HK, Brazg T, Crouch J, Namey EE, Fullerton SM, Beskow LM, Wilfond BS
      Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.
      22228059 Journal of empirical research on human research ethics : JERHRE, 2011 Dec. : 6(4)41-52 PMCID:PMC3426316
    • Beskow LM, Namey EE, Cadigan RJ, Brazg T, Crouch J, Henderson GE, Michie M, Nelson DK, Tabor HK, Wilfond BS
      Research participants' perspectives on genotype-driven research recruitment.
      22228056 Journal of empirical research on human research ethics : JERHRE, 2011 Dec. : 6(4)3-20 PMCID:PMC3395316
    • Tarini BA, Tercyak KP, Wilfond BS
      Commentary: Children and predictive genomic testing: disease prevention, research protection, and our future.
      21816897 Journal of pediatric psychology, 2011 Nov. : 36(10)1113-21 PMCID:PMC3199444
    • Beth A. Tarini, MD, MS, Kenneth P. Tercyak, PHD, and Benjamin S. Wilfond, MD
      Response to the Commentary: Children and Predictive Genomic Testing
      J Pediatr Psychol, 2011 Sept. 9 : 36(10)1128-9
    • Tercyak KP, Hensley Alford S, Emmons KM, Lipkus IM, Wilfond BS, McBride CM
      Parents' attitudes toward pediatric genetic testing for common disease risk.
      21502235 Pediatrics, 2011 May : 127(5)e1288-95 PMCID:PMC3081191
    • Richer J, Ghebremichael MS, Chudley AE, Robinson WM, Wilfond BS, Solomon MZ
      Research use of leftover newborn bloodspots: attitudes of Canadian geneticists regarding storage and informed consent requirements.
      20921895 Genetics in medicine : official journal of the American College of Medical Genetics, 2011 April : 13(4)305-13
    • Myers RE, Manne SL, Wilfond B, Sifri R, Ziring B, Wolf TA, Cocroft J, Ueland A, Petrich A, Swan H, DiCarlo M, Weinberg DS
      A randomized trial of genetic and environmental risk assessment (GERA) for colorectal cancer risk in primary care: trial design and baseline findings.
      20828635 Contemporary clinical trials, 2011 Jan. : 32(1)25-31 PMCID:PMC3006063
    • Goldenberg AJ, Hull SC, Wilfond BS, Sharp RR.
      Patient Perspectives on Group Benefits and Harms in Genetic Research
      Public Health Genomics, 2011 : 14(3)135-42
    • Benjamin S. Wilfond.
      Growth Attenuation: Health Outcomes and Social Services
      Hastings Center Report, 2011 : 41(5)7-8

    Other Publications

    • Magnus D, Wilfond BS
      Research on medical practices and the ethics of disclosure.
      25583909 Pediatrics, 2015 Feb. : 135(2)208-10
    • Clayton EW, McCullough LB, Biesecker LG, Joffe S, Ross LF, Wolf SM, Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group
      Addressing the ethical challenges in genetic testing and sequencing of children.
      24592828 The American journal of bioethics : AJOB, 2014 March : 14(3)3-9 PMCID:PMC3950962
    • Mann PC, Woodrum DE, Wilfond BS
      Fuzzy images: Ethical implications of using routine neuroimaging in premature neonates to predict neurologic outcomes.
      23623529 The Journal of pediatrics, 2013 Aug. : 163(2)587-92
    • McCormick JB, Sharp RR, Ottenberg AL, Reider CR, Taylor HA, Wilfond BS
      The establishment of research ethics consultation services (RECS): an emerging research resource.
      23399088 Clinical and translational science, 2013 Feb. : 6(1)40-4 PMCID:PMC3573851
    • Wilfond BS, Carey JC
      Parental Requests for Interventions in Children With Lethal Conditions in Clinical Ethics in Pediatrics: A Case Based Textbook
      Cambridge University Press, 2011 Oct. : 174-180
    • Press N, Wilfond BS, Murray M, Burke W
      The Power of Knowledge: How Carrier and Prenatal Screening Altered the Clinical Goals of Genetic Testing in Achieving Justice in Genome Translation: Rethinking the Pathway to Benefit
      Oxford University Press, 2011 Sept.
    • Alison D Archibald, Benjamin S Wilfond
      Population Carrier Screening: Psychological Impact
      Wiley and Sons, 2011 July 15 : eLS

  • Presentations Title Event Location Date
    Research Ethics Consultation: Common Challenges and Tailored Approaches American Society of Bioethics and Humanities Annual Meeting Washington, DC Oct. 19, 2012
    Social work and Bioethics: A Call For Collaboration American Society of Bioethics and Humanities Annual Meeting Washington, DC Oct. 19, 2012
    Research with Children: Complex Cases, Questions, and Conundrums Achieving Excellence in Clinical Research: Scientific, Ethical and Operational Considerations, Advocate Health Chicago, IL Sept. 28, 2012
    Returning Incidental Findings to Parents Disclosing Genomic Incidental Findings in Cancer Biobank, Working Group Minneapolis, MN June 1, 2012
    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 March 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
    Technological Interventions in Children with Profound Disabilities::Balancing Childrens Interests, Parental Preferences and Resource Constraint Grand Rounds, Rady Childrens Hospital San Diego, CA Jan. 6, 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
    Gene Discovery and Ethics Brain Development Conference, NeuroDevNet Vancouver, BC June 7, 2011
    Policy Approaches to Recruitment Workshop on Ethical Approaches to Genotype Driven Research Recruitment, Duke University Raleigh, NC May 23, 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 April 13, 2011


Medical/Professional School

University of Medicine and Dentistry of New Jersey, Newark


Pediatrics, University of Wisconsin Hospital and Clinics, Madison


Pediatric Pulmonology, University of Wisconsin Hospital and Clinics, Madison

Clinical Interests

As a pulmonologist, I currently focus on children with chronic lung diseases related to prematurity. I also have a particular interest in caring for children with lung problems related to complications of developmental disabilities. As medical ethicist, I focus on issues related to parental decision making for clinical care and the use of genetics technologies in both clinical care and research.

Research Description

I conduct research on ethical and policy issues related to genetic testing, genetic research and pediatrics research. I have recently worked on issues related to newborn screening, disclosure of genetic research results, pediatric biobanks, and children with disabilities. I have a particular interest in understanding the role of research ethics consultation in improving the quality of research.

Research Focus Area