Profile

Benjamin S. Wilfond, MD

On staff since July 2006

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

Academic Title: Professor and Head, Division of Bioethics, Department of Pediatrics; Adjunct Professor, Department of Bioethics and Humanities

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 attends in the Chest Clinic in the Division of Pulmonary Medicine at Seattle Children’s Hospital. 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 University of Medicine and Dentistry of New Jersey — 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 a member of the Ethics Subcommittee of the Food and Drug Administration's Pediatric Advisory Committee and the National Children’s Study Federal Advisory Committee.

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Overview
Publications
Presentations
Research Funding

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: Research Interests: 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 and pediatric biobanks. Clinical: General pediatric pulmonary with a particular focus on chronic lung disease of prematurity
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 and pediatric biobanks.

I am a member of the Ethics Subcommittee of the Food and Drug Administration's Pediatric Advisory Committee and the National Children?s Study Federal Advisory Committee.
Research Focus Area: Bioethics

Publications

Deliberate deceit of family members: a challenge to providers of clinical genetics services.
Journal of clinical oncology : official journal of the American Society of Clinical Oncology , 2006 Apr 1: 1643-6

From public health emergency to public health service: the implications of evolving criteria for newborn screening panels.
Pediatrics , 2006 Mar: 923-9

Therapeutic misconception in early phase gene transfer trials.
Social science & medicine (1982) , 2006 Jan: 239-53

Balancing benefits and risks for cystic fibrosis newborn screening: implications for policy decisions.
The Journal of pediatrics , 2005 Sep: S109-13

Policy issues for expanding newborn screening programs: the cystic fibrosis newborn screening experience in the United States.
The Journal of pediatrics , 2005 May: 668-74

Carrier screening panels for Ashkenazi Jews: is more better?
Genetics in medicine : official journal of the American College of Medical Genetics , 2005 Mar: 185-90

Consent forms and the therapeutic misconception: the example of gene transfer research.
IRB , 2005 Jan-Feb: 1-8

On the proliferation of bioethics sub-disciplines: do we really need "genethics" and "neuroethics"?
The American journal of bioethics : AJOB , 2005 Spring: 20-1; discussion W3-4

Ethical issues in newborn screening research: lessons from the Wisconsin cystic fibrosis trial.
The Journal of pediatrics , 2004 Sep: 292-6

Uncertain benefit: investigators' views and communications in early phase gene transfer trials.
Molecular therapy : the journal of the American Society of Gene Therapy , 2004 Aug: 225-31

Recruitment approaches for family studies: attitudes of index patients and their relatives.
IRB , 2004 Jul-Aug: 12-7

Institutional review board practices regarding assent in pediatric research.
Pediatrics , 2004 Jun: 1747-52

Genetic research involving human biological materials: a need to tailor current consent forms.
IRB , 2004 May-Jun: 1-7

How do institutional review boards apply the federal risk and benefit standards for pediatric research?
JAMA : the journal of the American Medical Association , 2004 Jan 28: 476-82

Ethical assessment of clinical asthma trials including children subjects.
Pediatrics , 2004 Jan: 87-94

Natural settings trials--improving the introduction of clinical genetic tests.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics , 2004 Spring: 106-10

Direct-to-consumer sales of genetic services on the Internet.
Genetics in medicine : official journal of the American College of Medical Genetics , 2003 Jul-Aug: 332-7

Nonbeneficial research with individuals who cannot consent: is it ethically better to enroll healthy or affected individuals?
IRB , 2003 Jul-Aug: 1-4

Assessing benefits in clinical research: why diversity in benefit assessment can be risky.
IRB , 2003 May-Jun: 1-8

Lethal language, lethal decisions.
The Hastings Center report , 2003 Mar-Apr: 37-41

When do the federal regulations allow placebo-controlled trials in children?
The Journal of pediatrics , 2003 Feb: 102-7

Descriptions of benefits and risks in consent forms for phase 1 oncology trials.
The New England journal of medicine , 2002 Dec 26: 2134-40

Does the current consent process minimize the risks of genetics research?
American journal of medical genetics , 2002 Dec 1: 258-62

Ethical issues in cystic fibrosis newborn screening: from data to public health policy.
Current opinion in pulmonary medicine , 2002 Nov: 529-34

Limitations of direct-to-consumer advertising for clinical genetic testing.
JAMA : the journal of the American Medical Association , 2002 Oct 9: 1762-7

Unintended messages: the ethics of teaching genetic dilemmas.
The Hastings Center report , 2002 Mar-Apr: 37-9

Emerging ethical issues in pharmacogenomics: from research to clinical practice.
American journal of pharmacogenomics : genomics-related research in drug development and clinical practice , 2002: 273-81

The invisible hand in clinical research: the study coordinator's critical role in human subjects protection.
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics , 2002 Fall: 411-9

Ethical issues in conducting behavioral genetics research: the case of smoking prevention trials among adolescents.
Journal of health care law & policy , 2002: 73-88

Ethical issues with genetic testing in pediatrics.
Pediatrics , 2001 Jun: 1451-5

Presentations

Presentations Title	Event	Location	Date
Ethical responsibilities regarding genetic testing for cancer susceptibility in children and family communication of genetic information to children	American Society of Human Genetics Annual Meeting	Honolulu. HI	Nov. 1, 2009
Ethical issues that emerge during clinical research	WIRB Annual Meeting	Seattle, WA	Sept. 1, 2009
Ethical issues in clinical and translational research	University of Montana	Missoula, MT	Sept. 1, 2009
Approaching informed consent after children grow up	Fred Hutchison Cancer Center IRB Informed Consent Working Group	Seattle, WA	Aug. 1, 2009
Ethical issues in Biobanks	21 Annual Bioethics Retreat	Cumberland, MD	July 1, 2009
Newborn Screening and the Alpha one foundation approach	Genetic Alliance Annual Meeting	Washington DC	July 1, 2009
Ethical Issues in Clinical and Translational Research	Ethics in the Science Classroom - NBABR	Pack Forest, WA	July 1, 2009
Ethical Challenges in Pediatric Biobanks: Balancing Risks and Benefits	Pediatric Academic Society Meeting	Baltimore, MD	May 1, 2009
Ethics of clinical data sharing	Data sharing: Governance and Ethics in the CTSA environment: ITHS Workshop	Seattle, WA	May 1, 2009
Research on residual newborn screening blood spots	March of Dimes Bioethics Advisory Committee Meeting	White Plains NY	May 1, 2009
Ethical issues in Pediatric Research	Washington State Society of Healthcare Attorneys Meeting	Seattle, WA	April 1, 2009
Biobanks: Approaching Informed Consent for Continuing Research After Children Grow Up	American College of Medical Genetics Annual Meeting	Tampa, FL	March 1, 2009
Revisiting the ASHG/ACMG Points to Consider: Why parents should have Authority to Consent on Behalf of their Children and adolescents may consent for themselves	American College of Medical Genetics Annual Meeting	Tampa, FL	March 1, 2009
Informed consent in clinical trials	Therapeutic Development Network Meeting. Cystic Fibrosis Foundation	Denver, CO	March 1, 2009
From Public health emergency to public health service: ethical and policy issues in expanding newborn screening	Early Detection of Neuromuscular Diseases. NICHD	Bethesda, MD	March 1, 2009
Evaluating Growth Attenuation in Children with Profound Disabilities: Interests of the Child, Family Decision-Making and Community Concerns	University of Washington	Seattle, WA	Jan. 1, 2009

Research Funding

Grant Title	Grantor	Amount	Award Date
Ethical Approaches to Genotype-Driven Research Recruitment	NHGRI	$850,201.00	Sept. 30, 2009
Parental Permission and the Adolescent Assent Process	NIH Clinical Center Department of Bioethics	$29,000.00	March 24, 2009
Institute of Translational Health Sciences	Regulatory Support and Bioethics Core	$6,513,229.00	Sept. 17, 2007
Development of the First Test for Common Cancer Risk in the General Population	The Doris Duke Charitable Foundation	$2,083,335.00	Oct. 1, 2005

Primary Office

Seattle Children's Research Institute

C9S - 6 - Clinical and Translational Research
1900 - 9th Ave Bldg 1

Seattle, WA 98101

206-987-6894

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