Profile

Benjamin S. Wilfond, MD

Benjamin S. Wilfond, MD

Bioethics, Pulmonary and Sleep Medicine

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 co-director of the Regulatory Support and Bioethics Core for the Institute of Translational Health Sciences and coordinates the ITHS Research Bioethics Consult Service. He earned his MD from the UMDNJ-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 and pediatric biobanks. He is the president of the Association of Bioethics Program directors, the chair for the Clinical Research Ethics Consultation Working Group for Clinical and Translational Science Awards program, and a member of the Bioethics and Legal Working Group of the Newborn Screening Translational Research Network.

Overview

Board Certification(s)

Pediatrics
Pediatric Pulmonology

Medical/Professional School

University of Medicine and Dentistry of New Jersey, Newark

Residency

Pediatrics, University of Wisconsin Hospital and Clinics, Madison

Fellowship

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

Bioethics

Publications

  • 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 Mar. 6 : 370891-94
  • 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
    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
    Quality Improvement Ethics: Lessons From the SUPPORT Study
    Am J Bioeth , 2013 Dec. : 13(12)14-19
  • Benjamin S. Wilfond, MD
    Oxygen and Estrogen
    Hastings Center Report , 2013 Nov. : 43(6)
  • Benjamin S. Wilfond, MD
    Challenging Cases in Research Ethics
    Am J Bioeth , 2013 Oct. : 13(10)60
  • 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
    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
  • Benjamin S. Wilfond, MD
    Recommendations for returning genomic incidental findings? We need to talk!
    Genet Med , 2013 Aug. : 15(11)85459
  • Benjamin S. Wilfond, MD
    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
  • Benjamin S. Wilfond, MD
    Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes
    J Pediatr , 2013 Aug. : 163(2)587-592
  • Benjamin S. Wilfond, MD
    Enhancing Children Against Unhealthy Behaviors An Ethical and Policy Assessment of Using a Nicotine Vaccine
    Public Health Ethics , 2013 July : 6(2)197-206
  • Benjamin S. Wilfond, MD
    The OHRP and SUPPORT
    The New England journal of medicine , 2013 June 5
  • 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
  • Benjamin S. Wilfond, MD
    Obstructive Sleep Apnea in a 17-Year-Old With Profound Cognitive Impairment
    Pediatrics , 2013 Feb. : 131(3)581-5
  • Benjamin S. Wilfond, MD
    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
  • Benjamin S. Wilfond, MD
    The Establishment of Research Ethics Consultation Services (RECS): An Emerging Research Resource
    Clin Transl Sci , 2013 Feb. : 6(1)40-4
  • Benjamin S. Wilfond, MD
    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.
    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.
    Pediatrics , 2012 Aug. : 130(2)293-8
  • Wilfond B
    Predicting our future: lessons from Winnie-the-Pooh.
    The Hastings Center report , 2012 July : 42(4)3
  • Wilfond BS, Diekema DS
    Engaging children in genomics research: decoding the meaning of assent in research.
    Genetics in medicine : official journal of the American College of Medical Genetics , 2012 Apr, : 14(4)437-43
  • 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.
    Genetics in medicine : official journal of the American College of Medical Genetics , 2012 Apr, : 14(4)361-84
  • 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.
    Journal of empirical research on human research ethics : JERHRE , 2011 Dec. : 6(4)3-20
  • 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.
    Journal of empirical research on human research ethics : JERHRE , 2011 Dec. : 6(4)41-52
  • Tarini BA, Tercyak KP, Wilfond BS
    Commentary: Children and predictive genomic testing: disease prevention, research protection, and our future.
    Journal of pediatric psychology , 2011 Nov. : 36(10)1113-21
  • Benjamin S. Wilfond, MD
    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
  • Benjamin S. Wilfond, MD
    Response to the Commentary: Children and Predictive Genomic Testing
    J Pediatr Psychol , 2011 Sept. 9 : 36(10)1128-9
  • Benjamin S. Wilfond, MD
    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.
  • Benjamin S. Wilfond, MD
    Population Carrier Screening: Psychological Impact
    Wiley & Sons , 2011 July 15 : eLS
  • Tercyak KP, Hensley Alford S, Emmons KM, Lipkus IM, Wilfond BS, McBride CM
    Parents' attitudes toward pediatric genetic testing for common disease risk.
    Pediatrics , 2011 May : 127(5)e1288-95
  • 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.
    Genetics in medicine : official journal of the American College of Medical Genetics , 2011 Apr, : 13(4)305-13
  • Benjamin S. Wilfond, MD
    Growth Attenuation: Health Outcomes and Social Services
    Hastings Center Report , 2011 : 41(5)7-8
  • Benjamin S. Wilfond, MD
    Patient Perspectives on Group Benefits and Harms in Genetic Research
    Public Health Genomics , 2011 : 14(3)135-42
  • 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.
    Contemporary clinical trials , 2011 Jan. : 32(1)25-31

Presentations

Presentations Title Event Location Date
Social work and Bioethics: A Call For Collaboration American Society of Bioethics and Humanities Annual Meeting Washington, DC Oct. 19, 2012
Research Ethics Consultation: Common Challenges and Tailored Approaches 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

Research Funding

Grant Title Grantor Amount Award Date
ITHS Supplement - Attitudes about the Ethics of Standard of Care Research NIH/NCATS Sept. 13, 2013
Clinical Implementation of Carrier Testing Using NGS NIH/NHGRI June 15, 2013
Institute of Translational Health Sciences NIH/NCATS June 1, 2012
Center for Genomics and Healthcare Equity NIH/NHGRI May 14, 2010