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List of works by Jeffrey R. Botkin

"Genetic exceptionalism" in medicine: clarifying the differences between genetic and nongenetic tests

scientific article published in April 2003

2052: Empirical assessment of a theatrical performance on attitudes and behavior intentions toward research: The informed consent play

A framework for key considerations regarding point-of-care screening of newborns

scientific article published on 16 August 2012

A randomized controlled trial of an electronic informed consent process.

scientific article published on 2 October 2014

Addressing the "petty tyranny" of IRBs

scientific article published on 01 April 2005

An Analysis of Information Technology Adoption by IRBs of Large Academic Medical Centers in the United States

scientific article

An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots

scientific article published in October 2017

An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research.

scientific article published on 7 March 2018

Are there characteristics of infectious diseases that raise special ethical issues?

scientific article published on 01 May 2004

Assessing public attitudes on the retention and use of residual newborn screening blood samples: A focus group study ⬇️

scientific article published on February 18, 2012

Assessing the new criteria for newborn screening

scientific article published on 01 January 2009

Attitudes of parents of children with serious health conditions regarding residual bloodspot use.

scientific article

Avoiding Harm From Hyperbilirubinemia Screening-Reply

scientific article published on 07 October 2019

Biobanking Research and Human Subjects Protections: Perspectives of IRB Leaders.

scientific article published in March 2015

Case studies in medical ethics

scientific article published on 01 November 1991

Clarify the HIPAA right of access to individuals' research data

scientific article published on 01 August 2019

Clinical report--Forgoing medically provided nutrition and hydration in children

scientific article

Communication analysis of BRCA1 genetic counseling

scientific article published on 01 October 2005

Comparison of Video, App, and Standard Consent Processes on Decision-Making for Biospecimen Research: A Randomized Controlled Trial

scientific article published on 03 April 2020

Concerns About Justification for Fetal Genome Sequencing

scientific article published in January 2017

Concerns of Newborn Blood Screening Advisory Committee Members Regarding Storage and Use of Residual Newborn Screening Blood Spots ⬇️

scientific article published on February 17, 2011

Correction: Ethical and public health implications of genetic testing for suicide risk: family and survivor perspectives

scientific article published on 22 December 2020

Cost-Effectiveness of Nusinersen and Universal Newborn Screening for Spinal Muscular Atrophy

scientific article published on 10 July 2020

Crushing Consent Under the Weight of Expectations

scientific article published in September 2015

Deliberative Discussion Focus Groups

scientific article

Developing a National Registry for conditions identifiable through newborn screening.

scientific article published in March 2009

Development of requirements and a pilot registry for long-term follow-up of children with heritable conditions

scientific article published on 11 October 2007

Education for fathers about newborn screening and leftover dried blood spots

scientific article

Effects of spouses on distress experienced by BRCA1 mutation carriers over time ⬇️

scientific article published on May 15, 2003

Ethical and public health implications of genetic testing for suicide risk: family and survivor perspectives

scientific article published on 06 October 2020

Ethical considerations in blood transfusions: informed consent and religious refusal

scientific article published on 01 January 1991

Ethical considerations in clinical care of the "VIP".

scientific article published in January 2007

Ethical issues in identifying and recruiting participants for familial genetic research.

scientific article published in November 2004

Ethical issues in pediatric genetic testing and screening

scientific article published on 6 September 2016

Ethics and evidence

scientific article published on 01 January 1992

Evaluating Harms in the Assessment of Net Benefit: A Framework for Newborn Screening Condition Review

scientific article published on February 2016

Evidence-based reviews of newborn-screening opportunities

scientific article published on 01 May 2010

Expanding newborn screening: process, policy, and priorities

scientific article published on 01 May 2008

Experiences among Women with Positive Prenatal Expanded Carrier Screening Results

scientific article published on 29 October 2016

Experiences and lessons learned by genetic counselors in returning secondary genetic findings to patients

scientific article published on 26 May 2020

Fertility intentions following testing for a BRCA1 gene mutation.

scientific article

Genetic Contextualism and the Value of a Structured Process

scientific article published on 01 January 2019

Genetic counseling and ethical issues for autism

scientific article

Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing

scientific article published on 01 April 2003

How infectious diseases got left out--and what this omission might have meant for bioethics

scientific article published in August 2005

Human subjects protections in community-engaged research: a research ethics framework

scientific article

IRB practices and policies regarding the secondary research use of biospecimens

scientific article published on 8 May 2015

Implementing a Central IRB Model in a Multicenter Research Network

scientific article published on 01 May 2019

Informed Consent for Biobank-Dependent Research ⬇️

scientific article published on August 1, 2012

Informed Consent for Genetic and Genomic Research

scientific article published on 01 December 2020

Informed consent for genetic research

article published in 2010

Informed consent for genetic research

scientific article published on 01 November 2005

Integrating a Federated Healthcare Data Query Platform With Electronic IRB Information Systems

scientific article

Interpersonal responses among sibling dyads tested for BRCA1/BRCA2 gene mutations

scientific article published on January 2008

Investigator Experiences and Attitudes About Research With Biospecimens

scientific article

National Institutes of Health State-of-the-Science Conference Statement: Family History and Improving Health

scientific article published on December 2009

National Institutes of Health State-of-the-Science Conference Statement: Family History and Improving Health: August 24-26, 2009.

scientific article published on August 2009

Newborn Screening for Fragile X Syndrome: Do We Care What Parents Think? ⬇️

scientific article published on May 29, 2011

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

Newborn screening: ethical, legal, and social implications

scientific article published on January 2011

Nine key functions for a human subjects protection program for community-engaged research: points to consider

scientific article

Outcomes of interest in evidence-based evaluations of genetic tests

scientific article published on April 2010

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

scientific article published on 06 January 2014

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

scientific article published on October 2008

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

scientific article published on October 2009

Planning the Genome Institute's Future

scientific article published in Science

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

Policy issues and stakeholder concerns regarding the storage and use of residual newborn dried blood samples for research

scientific article published on February 2010

Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial

scientific article published on 04 April 2016

Prenatal diagnosis and the selection of children

scientific article published on 01 January 2003

Preventing exploitation in pediatric research

scientific article published in January 2003

Professional opportunities and responsibilities in the provision of genetic information to children relinquished for adoption

scientific article published in May 2003

Proposed regulations for research with biospecimens: responses from stakeholders at CTSA consortium institutions.

scientific article

Public Attitudes Regarding the Use of Residual Newborn Screening Specimens for Research ⬇️

scientific article published on January 16, 2012

Public attitudes regarding a pilot study of newborn screening for spinal muscular atrophy.

scientific article published on 26 February 2013

Public attitudes regarding the use of electronic health information and residual clinical tissues for research

scientific article

Public attitudes regarding the use of electronic health information and residual clinical tissues for research.

scientific article published on 3 February 2015

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

scientific article

Research for newborn screening: developing a national framework

scientific article published in October 2005

Residual newborn screening samples for research: Parental information needs for decision‐making ⬇️

scientific article published on March 5, 2013

Screening for Neonatal Hyperbilirubinemia-First Do No Harm?

scientific article published on 01 July 2019

Screening for sudden cardiac death in the young: report from a national heart, lung, and blood institute working group

scientific article published on May 2011

Secondary research uses of residual newborn screening dried bloodspots: a scoping review.

scientific article

Should Failure to Disclose Significant Financial Conflicts of Interest Be Considered Research Misconduct?

scientific article published on 01 December 2018

Standardizing return of participant results

scientific article

State Laws Regarding the Retention and Use of Residual Newborn Screening Blood Samples ⬇️

scientific article published on March 28, 2011

Success rates for consent and collection of prenatal biological specimens in an epidemiologic survey of child health

scientific article

The Bane of "Boilerplate" Language in Research Consent Forms: Ensuring Consent Forms Promote Autonomous Authorization

scientific article published on 01 April 2019

The Influence of Education on Public Trust and Consent Preferences With Residual Newborn Screening Dried Blood spots

scientific article published on 6 July 2016

The Use of a Game-Based Decision Aid to Educate Pregnant Women about Prenatal Screening: A Randomized Controlled Study.

scientific article

The case for banning heritable genome editing

scientific article published on 21 November 2019

The challenges of collaboration for academic and community partners in a research partnership: points to consider

scientific article

The irregular terrain of human subjects research regulations. Commentary

scientific article published in July 2014

The value of evidence-based risk assessments ⬇️

scientific article published on 01 December 2011

Transparency and choice in learning healthcare systems

scientific article published on 11 December 2017

Waving Goodbye to Waivers of Consent

scientific article published in November 2015

What parents want to know about the storage and use of residual newborn bloodspots

scientific article published on 04 August 2014

Whole Genome Sequencing and Newborn Screening

scientific article published on February 2016

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