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List of works by Benjamin S Wilfond

"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research

"If He Has it, We Know What to Do": Parent Perspectives on Familial Risk for Autism Spectrum Disorder

scientific article published in March 2020

"Is It Worth Knowing?" Focus Group Participants' Perceived Utility of Genomic Preconception Carrier Screening

scientific article

"Watching time tick by…": Decision making for Duchenne muscular dystrophy trials

scientific article published on 3 November 2015

A Cluster Randomized Trial to Screen for Abusive Head Trauma in the Pediatric Intensive Care Unit-How to Manage Site-Specific Evidence of Racial/Ethnic Disparity

scientific article published on 01 October 2019

A Conceptual Model for the Translation of Bioethics Research and Scholarship

scientific article published in September 2016

A Pragmatic Trial of Suicide Risk Assessment and Ambulance Transport Decision Making Among Emergency Medical Services Providers: Implications for Patient Consent

scientific article published on 01 October 2019

A Randomized Trial of Rapamycin to Increase Longevity and Healthspan in Companion Animals: Navigating the Boundary Between Protections for Animal Research and Human Subjects Research

scientific article published on 01 October 2018

A Trial to Test a Novel Approach to Diabetes Prevention

scientific article published in October 2017

A case for expanding carrier testing to include actionable X-linked disorders

scientific article published on 19 September 2018

A comparison of institutional review board professionals' and patients' views on consent for research on medical practices

scientific article published on June 2016

A decision aid for additional findings in genomic sequencing: Development and pilot testing

scientific article published on 06 November 2020

A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent

scientific article published on 13 September 2016

A randomized trial of genetic and environmental risk assessment (GERA) for colorectal cancer risk in primary care: Trial design and baseline findings ⬇️

scientific article published on September 7, 2010

ATS Consensus Statement: Research opportunities and challenges in pediatric pulmonology

scientific article

Accepting Brain Death

scientific article published on 05 February 2014

Actionable exomic incidental findings in 6503 participants: challenges of variant classification

scientific article

Adolescent Research Participants' Descriptions of Medical Research

scientific article published on 19 February 2015

Adrift in the Gray Zone: IRB Perspectives on Research in the Learning Health System

scientific article

All in the family: disclosure of "unwanted" information to an adolescent to benefit a relative.

scientific article published in November 2008

An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses

scientific article published on 01 April 2008

Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience

scientific article published on 21 August 2018

Assent in research: the voices of adolescents

scientific article

Assessing Benefits in Clinical Research: Why Diversity in Benefit Assessment Can Be Risky ⬇️

scientific article published on May 1, 2003

Assessing Parent Decisions About Child Participation in a Behavioral Health Intervention Study and Utility of Informed Consent Forms

scientific article published on 01 July 2020

Assessment of willingness to pay for expanded carrier screening among women and couples undergoing preconception carrier screening

scientific article published in PLoS ONE

Attending to the Interrelatedness of the Functions of Consent

scientific article published in December 2017

Attitudes Toward Risk and Informed Consent for Research on Medical Practices: A Cross-sectional Survey

scientific article published on May 2015

Balancing benefits and risks for cystic fibrosis newborn screening: implications for policy decisions

scientific article

Barriers and facilitators to clinical trial participation among parents of children with pediatric neuromuscular disorders

Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research

scientific article published on 01 April 2018

Breaking the Sounds of Silence: Respecting People With Disabilities and Reproductive Decision Making

journal article; published in The American Journal of Bioethics in 2017

Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation

scientific article published on 11 January 2018

Broad Consent for Research With Biological Samples: Workshop Conclusions

scientific article

Building a Central Repository for Research Ethics Consultation Data: A Proposal for a Standard Data Collection Tool

scientific article

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study

scientific article published on 08 July 2019

Carrier screening panels for Ashkenazi Jews: is more better?

scientific article published in March 2005

Case vignette: placebos and informed consent

scientific article published in January 1998

Challenging cases in research ethics

scientific article published on April 2015

Challenging cases in research ethics

scientific article

Challenging cases in research ethics

Clearing Muddy Waters: The Need to Reconceptualize Minor Increase over Minimal Risk in Pediatric Rare Disease Research

scientific article published on 01 May 2020

Click Here to Complete This Survey: Online Research, Adolescents, and Parental Consent

scientific article published on 01 October 2020

Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine

scientific article

Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine

article

Clinical trials and medical care: defining the therapeutic misconception

scientific article

Comment on “Multidimensional Results Reporting to Participants in Genomic Studies: Getting It Right” ⬇️

scientific article published on February 16, 2011

Commentary on Kim Miller

scientific article published on 29 September 2015

Commentary: Children and Predictive Genomic Testing: Disease Prevention, Research Protection, and Our Future ⬇️

scientific article published on August 4, 2011

Comprehension and Choice Under the Revised Common Rule: Improving Informed Consent by Offering Reasons Why Some Enroll in Research and Others Do Not.

scientific article published in July 2017

Conflicts of Interest and Distribution of Resources to Community Partners: An Organizational Ethics Dilemma

scientific article

Conflicts of Interest and Recommendations for Clinical Treatments That Benefit Researchers

scientific article published on 01 October 2020

Consent for clinical genome sequencing: considerations from the Clinical Sequencing Exploratory Research Consortium

scientific article published on 17 July 2019

Consent forms and the therapeutic misconception: the example of gene transfer research

article

Contrasting views of risk perception and influence of financial compensation between adolescent research participants and their parents

scientific article published on 17 December 2014

Correction: Secondary findings from clinical genomic sequencing: prevalence, patient perspectives, family history assessment, and health-care costs from a multisite study

scientific article published on 01 May 2019

Cosmetic surgery in children with cognitive disabilities: who benefits? Who decides?

scientific article published on 01 January 2009

Decision-Making for Children with Disabilities: Parental Discretion and Moral Ambiguity

scientific article

Decisions regarding resuscitation of extremely premature infants: should social context matter?

scientific article published in June 2015

Defining the Scope and Improving the Quality of Clinical Research Ethics Consultation: Response to Open Peer Commentaries About the National Collaborative

scientific article published in February 2018

Deliberate deceit of family members: a challenge to providers of clinical genetics services

scientific article published on 01 April 2006

Demonstrating 'respect for persons' in clinical research: findings from qualitative interviews with diverse genomics research participants

scientific article published on 06 October 2020

Descriptions of benefits and risks in consent forms for phase 1 oncology trials

Design of a randomized controlled trial for genomic carrier screening in healthy patients seeking preconception genetic testing

scientific article published on 07 December 2016

Direct-to-consumer sales of genetic services on the Internet

scientific article published on July 2003

Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families"

scientific article

Disclosing individual genetic results to research participants

scientific article

Discordant Patient and Clinician Perspectives on the Potential Value of Genetic Services in Safety-Net Clinics

scientific article published on 01 January 2020

Does the current consent process minimize the risks of genetics research?

scientific article

Effects of genetic risk information on children's psychosocial wellbeing: a systematic review of the literature

scientific article published on June 2010

Emerging ethical issues in pharmacogenomics: from research to clinical practice.

scientific article

Engaging children in genomics research: decoding the meaning of assent in research

scientific article published on 09 February 2012

Enhancing Children against Unhealthy Behaviors-An Ethical and Policy Assessment of Using a Nicotine Vaccine

scientific article published on July 2013

Ethical Considerations for Unblinding a Participant's Assignment to Interpret a Resolved Adverse Event

scientific article published on 01 October 2018

Ethical Drug Development for Rare Childhood Diseases: When There Are Limited But Promising Data in Adults, How to Choose Between Safety or Efficacy Studies?

scientific article published on 01 May 2020

Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results

scientific article published on 14 March 2019

Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests

scientific article published on November 2006

Ethical assessment of clinical asthma trials including children subjects

scientific article published on January 2004

Ethical challenges in research with orphans and vulnerable children: a qualitative study of researcher experiences

scientific article published in May 2016

Ethical considerations about observational research in children.

scientific article published in December 2007

Ethical implications of social media in health care research

scientific article published in January 2014

Ethical issues in conducting behavioral genetics research: the case of smoking prevention trials among adolescents.

scientific article published in January 2002

Ethical issues in cystic fibrosis newborn screening: from data to public health policy

scientific article

Ethical issues in newborn screening research: lessons from the Wisconsin cystic fibrosis trial

scientific article published on 01 September 2004

Ethics of continuing to provide a drug on an open-label extension study for an "unapproved indication".

scientific article published in January 2014

Examining palliative care team involvement in automatic consultations for children on extracorporeal life support in the pediatric intensive care unit.

scientific article published on 29 March 2013

Expanded Access for Nusinersen in Patients With Spinal Muscular Atropy: Negotiating Limited Data, Limited Alternative Treatments, and Limited Hospital Resources

scientific article published in October 2017

Family Experiences Deciding For and Against Pediatric Home Ventilation

scientific article published on 14 October 2020

Flexibility Required: Balancing the Interests of Children and Risk in Drug Development for Rare Pediatric Conditions

scientific article published on 01 May 2020

From genetics to genomics: ethics, policy, and parental decision-making

scientific article published on 22 July 2008

From public health emergency to public health service: the implications of evolving criteria for newborn screening panels

scientific article published on March 2006

Fuzzy images: Ethical implications of using routine neuroimaging in premature neonates to predict neurologic outcomes

scientific article published on 24 April 2013

Gaps in the Implementation of Shared Decision-making: Illustrative Cases

scientific article published on 05 February 2019

Generating a taxonomy for genetic conditions relevant to reproductive planning.

scientific article published in March 2016

Genetic and environmental risk assessment for colorectal cancer risk in primary care practice settings: a pilot study

scientific article published in June 2007

Genetic research involving human biological materials: a need to tailor current consent forms

scientific article published on 01 May 2004

Genome sequencing and carrier testing: decisions on categorization and whether to disclose results of carrier testing

scientific article

Genotype-Driven Recruitment in Population-Based Biomedical Research

journal article; published in The American Journal of Bioethics in 2017

Greater Than Minimal Risk, No Direct Benefit - Bridging Drug Trials and Novel Therapy in Pediatric Populations

scientific article published on 01 May 2020

Growing up in the genomic era: implications of whole-genome sequencing for children, families, and pediatric practice

scientific article

Guidelines for implementation of cystic fibrosis newborn screening programs: Cystic Fibrosis Foundation workshop report

scientific article published in February 2007

HIV Remission in Neonates: Ethical and Human Rights Considerations

scientific article published on January 2016

How do institutional review boards apply the federal risk and benefit standards for pediatric research?

scientific article published on January 2004

Incidental findings in pediatric research

scientific article published on January 2008

Including ELSI research questions in newborn screening pilot studies

scientific article published on 13 August 2018

Informed Consent for Research on Medical Practices

article

Informed consent for a neonatal clinical trial: parental experiences and perspectives

scientific article published on 25 May 2018

Institutional review board practices regarding assent in pediatric research

scientific article published on June 2004

Integrating ethics and patient safety: the role of clinical ethics consultants in quality improvement

scientific article

Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol's evolution

scientific article published on 24 February 2020

Is "incidental finding" the best term?: a study of patients' preferences

scientific article published on 04 August 2016

Is It Ethical to Enroll Cognitively Impaired Adults in Research That Is More Than Minimal Risk With No Prospect of Benefit?

scientific article published in October 2015

It's complicated: criteria for policy decisions for the clinical integration of genome-scale sequencing for reproductive decision making

scientific article published in July 2015

Justifying Investigator/Clinician Consent When The Physician-Patient Relationship Can Support Better Research Decision-Making

scientific article published on 01 April 2019

Lessons Learned From A Study Of Genomics-Based Carrier Screening For Reproductive Decision Making

scientific article published on 01 May 2018

Lethal language, lethal decisions.

scientific article published in March 2003

Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium

scientific article published on 29 August 2012

Limitations of direct-to-consumer advertising for clinical genetic testing

scientific article

Managing disclosure of research misconduct by a graduate student to a university mental health professional during a clinical counseling session

scientific article

Managing incidental findings and research results in genomic research involving biobanks and archived data sets

scientific article

Managing incidental findings in human subjects research: analysis and recommendations

scientific article published on January 2008

Metaphors matter: from biobank to a library of medical information

scientific article published on 21 December 2017

Methodological and Ethical Issues in Pediatric Medication Safety Research

scientific article published on 4 August 2017

Moving Beyond Using the Term Poor Prognosis in Children With Severe Neurological Impairment: A Linguistic Shortcut Better Avoided

scientific article published on 25 November 2019

Natural settings trials--improving the introduction of clinical genetic tests.

scientific article published on January 2004

Navigating growth attenuation in children with profound disabilities. Children's interests, family decision-making, and community concerns

scientific article published on 01 November 2010

Navigating parental permission for neonatal research

scientific article published in January 2015

Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium

scientific article published on 31 August 2017

Newborn screening for cystic fibrosis: evaluation of benefits and risks and recommendations for state newborn screening programs.

scientific article published in October 2004

Newborn screening technology: proceed with caution

scientific article

Nonbeneficial research with individuals who cannot consent: is it ethically better to enroll healthy or affected individuals?

scientific article published in July 2003

On the proliferation of bioethics sub-disciplines: do we really need "genethics" and "neuroethics"?

scientific article published in March 2005

Our children are not a diagnosis: the experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18.

scientific article

Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment

scientific article

Parental permission for pilot newborn screening research: guidelines from the NBSTRN.

scientific article published on 06 January 2014

Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk ⬇️

scientific article published on April 18, 2011

Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some

scientific article published on 01 September 2019

Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study

scientific article published on 26 September 2020

Patient Perspectives on the Learning Health System: The Importance of Trust and Shared Decision Making

scientific article published on September 2015

Patient perspectives on the use of categories of conditions for decision making about genomic carrier screening results

scientific article published on 18 December 2017

Patients' ratings of genetic conditions validate a taxonomy to simplify decisions about preconception carrier screening via genome sequencing.

scientific article published on 21 January 2016

Patients' views on identifiability of samples and informed consent for genetic research

scientific article published on October 2008

Pediatric Clinical Trial Activity for Antipsychotics and the Sharing of Results

Pediatric Drug Labeling and Imperfect Information

scientific article published on 01 January 2020

Pediatric biobanks: approaching informed consent for continuing research after children grow up.

scientific article published on October 2009

Pediatric clinical exome/genome sequencing and the engagement process: encouraging active conversation with the older child and adolescent: points to consider-a statement of the American College of Medical Genetics and Genomics (ACMG).

scientific article published on 22 March 2018

Phenylketonuria Scientific Review Conference: state of the science and future research needs

scientific article published on 6 March 2014

Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents

scientific article

Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents

article published in 2015

Points to consider: The research ethics consultation service and the IRB

scientific article (publication date: 2009)

Policy in the light: professional society guidelines begin the ethical conversations about screening.

scientific article published in April 2009

Policy issues for expanding newborn screening programs: the cystic fibrosis newborn screening experience in the United States

scientific article

Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants

scientific article published on 27 March 2018

Precluding consent by clinicians who are both the attending and the investigator: an outdated shibboleth?

scientific article published on January 2015

Preconception Carrier Screening by Genome Sequencing: Results from the Clinical Laboratory

scientific article published on 10 May 2018

Predicting Our Future: Lessons from Winnie‐the‐Pooh ⬇️

scientific article published on July 1, 2012

Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice

scientific article

Protecting research subject welfare in preventive trials for autosomal dominant Alzheimer's disease

scientific article published on January 2015

Protection Versus Progress: The Challenge of Research on Cannabis Use During Pregnancy

scientific article published on 01 August 2020

Public attitudes toward an authorization for contact program for clinical research

scientific article published on 05 November 2020

Quality improvement ethics: lessons from the SUPPORT study

scientific article

Reasons for Declining Preconception Expanded Carrier Screening Using Genome Sequencing

scientific article published on 17 March 2017

Recommendations for ethical approaches to genotype-driven research recruitment

scientific article

Recommendations for returning genomic incidental findings? We need to talk!

scientific article

Recontact and Recruitment of Young Adults Previously Enrolled in Neonatal Herpes Simplex Virus Research

scientific article published on October 2015

Recruitment approaches for family studies: attitudes of index patients and their relatives.

scientific article published on July 2004

Reimagining the Goal of Informed Consent to Help Patients Make Decisions About Research

scientific article published on 01 May 2020

Relationships help make life worth living

scientific article published on 15 November 2019

Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.

scientific article

Research Consent at the Age of Majority: Preferable but not Obligatory

scientific article published on 06 July 2018

Research Recruitment of Adult Survivors of Neonatal Infections: Is There a Role for Parental Consent?

scientific article published on October 2015

Research ethics consultation: ethical and professional practice challenges and recommendations

scientific article

Research on Medical Practices (ROMP): Attitudes of IRB Personnel about Randomization and Informed Consent

article

Research on Medical Practices and the Patient-Physician Relationship: What Can Regulators Learn from Patients?

scientific article

Research on Medical Practices: Why Patients Consider Participating and the Investigational Misconception

scientific article published on 01 July 2017

Research on medical practices and the ethics of disclosure

scientific article published on 12 January 2015

Research participants' perspectives on genotype-driven research recruitment

scientific article

Research to Promote Longevity and Health Span in Companion Dogs: A Pediatric Perspective

article

Research use of leftover newborn bloodspots: Attitudes of Canadian geneticists regarding storage and informed consent requirements ⬇️

scientific article published on April 1, 2011

Responding to Adolescents with Cancer who Refuse Sperm Banking: When "No" Should Not Be the Last Word

scientific article

Responding to parental requests for life-sustaining treatment - relational potential revisited

scientific article published on 8 December 2017

Response to Open Peer Commentaries on “Disclosing Individual Genetic Results to Research Participants”: Defining Clinical Utility And Revisiting the Role of Relationships

journal article; published in The American Journal of Bioethics in 2006

Rethinking the "open future" argument against predictive genetic testing of children

scientific article published on 21 March 2019

Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations

scientific article

Review of Current Care Models for Transgender Youth and Application to the Development of a Multidisciplinary Clinic - The Seattle Children's Hospital Experience

scientific article published on 01 April 2018

Role for CTSAs in leveraging a distributed research infrastructure to engage diverse stakeholders in emergent research policy development

scientific article

Screening policy for cystic fibrosis: the role of evidence

scientific article published on May 1, 1995

Secondary findings from clinical genomic sequencing: prevalence, patient perspectives, family history assessment, and health-care costs from a multisite study

article

Sharing data and experience: using the Clinical and Translational Science Award (CTSA) "moral community" to improve research ethics consultation

scientific article

Should Patients Be Required to Undergo Standard Chemotherapy Before Being Eligible for Novel Phase I Immunotherapy Clinical Trials?

scientific article published in April 2017

Should Research Participants Be Notified About Results of Currently Unknown but Potential Significance?

scientific article published on 01 April 2019

Studying the Role of Financial Incentives to Promote Hepatitis B Vaccination in a Community Clinic

journal article; published in The American Journal of Bioethics in 2016

The Ashley case: the public response and policy implications.

scientific article published in September 2007

The Clinical Sequencing Evidence-Generating Research Consortium: Integrating Genomic Sequencing in Diverse and Medically Underserved Populations

scientific article published on 01 September 2018

The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative.

scientific article

The Experience of Families With Children With Trisomy 13 and 18 in Social Networks ⬇️

scientific article published on July 23, 2012

The Genetic Information Nondiscrimination Act: fear factor or fantasy island?

scientific article published on 01 November 2008

The Limitations of "Boilerplate" Language in Informed Consent: Single IRB Review of Multisite Genetic Research in Military Personnel

scientific article published on 01 April 2019

The NextGen Study: patient motivation for participation in genome sequencing for carrier status.

scientific article published on 2 July 2017

The OHRP and SUPPORT

scientific article

The Relational Potential Standard: Rethinking the Ethical Justification for Life-Sustaining Treatment for Children with Profound Cognitive Disabilities

scientific article published on 01 May 2019

The Role of Community Engagement in Novel HIV Research in Infants

scientific article published on January 2016

The Role of Patient Perspectives in Clinical Research Ethics and Policy: Response to Open Peer Commentaries on "Patient Perspectives on the Learning Health System".

scientific article published on February 2016

The cystic fibrosis gene: medical and social implications for heterozygote detection

scientific article

The establishment of research ethics consultation services (RECS): an emerging research resource

scientific article (publication date: February 2013)

The ethics and regulatory landscape of including vulnerable populations in pragmatic clinical trials

scientific article

The ethics of contacting family members of a subject in a genetic research study to return results for an autosomal dominant syndrome.

scientific article

The ethics of disclosing to research subjects the availability of off-label marketed drugs

scientific article published in January 2014

The evolving landscape of expanded carrier screening: challenges and opportunities

scientific article published on 24 September 2018

The invisible hand in clinical research: the study coordinator's critical role in human subjects protection

scientific article published on January 2002

The obligations to report statutory sexual abuse disclosed in a research study

scientific article published in January 2014

The potential harms and benefits from research on medical practices

scientific article

Therapeutic misconception in early phase gene transfer trials

scientific article

Time Costs for Genetic Counseling in Preconception Carrier Screening with Genome Sequencing

scientific article published on 8 February 2018

Tracheostomies and assisted ventilation in children with profound disabilities: navigating family and professional values

scientific article published in February 2014

Trustworthiness in Untrustworthy Times: Response to Open Peer Commentaries on Beyond Consent

journal article; published in The American Journal of Bioethics in 2018

Uncertain benefit: investigators' views and communications in early phase gene transfer trials

scientific article published in August 2004

Understanding as an Ethical Aspiration in an Era of Digital Technology-Based Communication: An Analysis of Informed Consent Functions

scientific article published on 01 May 2019

Unintended messages: the ethics of teaching genetic dilemmas

scientific article published on 01 March 2002

Waiving informed consent in newborn screening research: balancing social value and respect

What does it mean to be identifiable?

scientific article

When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority

scientific article published on 15 October 2015

When a Clinical Trial Is the Only Option

journal article; published in The American Journal of Bioethics in 2016

When do the federal regulations allow placebo-controlled trials in children?

scientific article

\Defining Patient Advocacy for the Context of Clinical Ethics Consultation: A Review of the Literature and Recommendations for Consultants

scientific article published on January 2016

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