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 Childrens 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 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 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 an member of the Bioethics and Legal Working Group of the Newborn Screening Translational Research Network.

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Overview
Publications
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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: 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

Recommendations for ethical approaches to genotype-driven research recruitment.
Human genetics , 2012 Sep: 131(9)1423-31

The experience of families with children with trisomy 13 and 18 in social networks.
Pediatrics , 2012 Aug: 130(2)293-8

Predicting our future: lessons from Winnie-the-Pooh.
The Hastings Center report , 2012 Jul-Aug: 42(4)3

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

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

Research participants' perspectives on genotype-driven research recruitment.
Journal of empirical research on human research ethics : JERHRE , 2011 Dec: 6(4)3-20

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

Commentary: Children and predictive genomic testing: disease prevention, research protection, and our future.
Journal of pediatric psychology , 2011 Nov-Dec: 36(10)1113-21

Parents' attitudes toward pediatric genetic testing for common disease risk.
Pediatrics , 2011 May: 127(5)e1288-95

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

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

Navigating growth attenuation in children with profound disabilities. Children's interests, family decision-making, and community concerns.
The Hastings Center report , 2010 Nov-Dec: 40(6)27-40

Effects of genetic risk information on children's psychosocial wellbeing: a systematic review of the literature.
Genetics in medicine : official journal of the American College of Medical Genetics , 2010 Jun: 12(6)317-26

Points to consider: The research ethics consultation service and the IRB.
IRB , 2009 Nov-Dec: 31(6)1-9

Pediatric biobanks: approaching informed consent for continuing research after children grow up.
The Journal of pediatrics , 2009 Oct: 155(4)578-83

From genetics to genomics: ethics, policy, and parental decision-making.
Journal of pediatric psychology , 2009 Jul: 34(6)639-47

Policy in the light: professional society guidelines begin the ethical conversations about screening.
The American journal of bioethics : AJOB , 2009 Apr: 9(4)17-9

All in the family: disclosure of "unwanted" information to an adolescent to benefit a relative.
American journal of medical genetics. Part A , 2008 Nov 1: 146A(21)2719-24

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 , April 2006: 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

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
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. 2012
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. 2011
What does it mean to get assent from children in pediatric biobank genomic research	Pediatric Academic Society Meeting	Denver CO	May 2011
Research Bioethics Consultation	American Society of Bioethics and Humanities Annual Meeting	San Diego CA	Oct. 2010
Ethical and Social Implications of providing intensive interventions to infant for whom clinical or developmental prognosis is uncertain	Pediatric Academic Societies Annual Meeting	Vancouver BC Canada	May 2010

Research Funding

Grant Title	Grantor	Amount	Award Date
Bioethics Consultation Standardization and Data-Sharing	NIH/NCRR	$428,712	Sept. 11, 2010 - May 31, 2011
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
The Ethical and Policy Implications of Growth Attenuation in Children with Profound Developmental Disabilities	Greenwall Foundation-Bioethics Award Program	$40,000	Jan. 1, 2008 - Dec. 31, 2008

Primary Office

Seattle Children's Research Institute

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

Seattle, WA 98101

206-844-8355

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Benjamin S. Wilfond, MD

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