Lista de obras -

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

artículo científico publicado en 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

artículo científico publicado en 2012

A randomized controlled trial of an electronic informed consent process.

artículo científico publicado en 2014

Addressing the "petty tyranny" of IRBs

artículo científico publicado en 2005

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

artículo científico publicado en 2014

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

artículo científico publicado en 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.

artículo científico publicado en 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

artículo científico publicado en 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.

artículo científico publicado en 2014

Avoiding Harm From Hyperbilirubinemia Screening-Reply

scientific article published on 07 October 2019

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

artículo científico publicado en 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

artículo científico publicado en 2009

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

artículo científico publicado en 2017

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

artículo científico publicado el 17 de febrero de 2011

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

artículo científico publicado en 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

artículo científico publicado en 2015

Deliberative Discussion Focus Groups

artículo científico publicado en 2015

Developing a National Registry for conditions identifiable through newborn screening.

artículo científico publicado en 2009

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

artículo científico publicado en 2007

Education for fathers about newborn screening and leftover dried blood spots

artículo científico publicado en 2017

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

artículo científico publicado el 15 de mayo de 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".

artículo científico publicado en 2007

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

artículo científico publicado en 2004

Ethical issues in pediatric genetic testing and screening

artículo científico publicado en 2016

Ethics and evidence

artículo científico publicado en 1992

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

artículo científico publicado en 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

artículo científico publicado en 2016

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

artículo científico publicado en 2020

Fertility intentions following testing for a BRCA1 gene mutation.

artículo científico publicado en 2004

Genetic Contextualism and the Value of a Structured Process

artículo científico publicado en 2019

Genetic counseling and ethical issues for autism

artículo científico publicado en 2006

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

artículo científico publicado en 2003

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

artículo científico publicado en 2005

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

artículo científico publicado en 2010

IRB practices and policies regarding the secondary research use of biospecimens

artículo científico publicado en 2015

Implementing a Central IRB Model in a Multicenter Research Network

artículo científico publicado en 2019

Informed Consent for Biobank-Dependent Research

artículo científico publicado en 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

artículo científico publicado en 2010

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

artículo científico publicado en 2008

Investigator Experiences and Attitudes About Research With Biospecimens

artículo científico publicado en 2015

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

artículo científico publicado en 2009

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

artículo científico publicado en 2009

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

artículo científico publicado el 29 de mayo de 2011

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

artículo científico publicado en 2004

Newborn screening technology: proceed with caution

artículo científico publicado en 2006

Newborn screening: ethical, legal, and social implications

artículo científico publicado en 2011

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

artículo científico publicado en 2010

Outcomes of interest in evidence-based evaluations of genetic tests

artículo científico publicado en 2010

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

artículo científico publicado en 2014

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

artículo científico publicado en 2008

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

artículo científico publicado en 2009

Planning the Genome Institute's Future

artículo científico publicado en 2003

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

artículo científico publicado en 2015

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

artículo científico publicado en 2010

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

artículo científico

Prenatal diagnosis and the selection of children

artículo científico publicado en 2003

Preventing exploitation in pediatric research

artículo científico publicado en 2003

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

artículo científico publicado en 2003

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

artículo científico publicado en 2014

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

artículo científico publicado el 16 de enero de 2012

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

artículo científico publicado en 2013

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

artículo científico publicado en 2013

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

artículo científico publicado en 2015

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

artículo científico publicado en 2013

Research for newborn screening: developing a national framework.

artículo científico publicado en 2005

Residual newborn screening samples for research: parental information needs for decision-making

artículo científico publicado en 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.

artículo científico publicado en 2018

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

artículo científico publicado en 2018

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

artículo científico publicado el 28 de marzo de 2011

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

artículo científico publicado en 2016

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

artículo científico publicado en 2016

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

artículo científico publicado en 2018

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

artículo científico publicado en 2010

The irregular terrain of human subjects research regulations. Commentary

artículo científico publicado en 2014

The value of evidence-based risk assessments ⬇️

artículo científico publicado el 1 de diciembre de 2011

Transparency and choice in learning healthcare systems

scientific article published on 11 December 2017

Waving Goodbye to Waivers of Consent

artículo científico publicado en 2015

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

artículo científico publicado en 2014

Whole Genome Sequencing and Newborn Screening

artículo científico publicado en 2016

Lista de obras de

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

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

A randomized controlled trial of an electronic informed consent process.

Addressing the "petty tyranny" of IRBs

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

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

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.

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

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

Assessing the new criteria for newborn screening

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

Avoiding Harm From Hyperbilirubinemia Screening-Reply

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

Case studies in medical ethics

Clarify the HIPAA right of access to individuals' research data

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

Communication analysis of BRCA1 genetic counseling

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

Concerns About Justification for Fetal Genome Sequencing

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

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

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

Crushing Consent Under the Weight of Expectations

Deliberative Discussion Focus Groups

Developing a National Registry for conditions identifiable through newborn screening.

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

Education for fathers about newborn screening and leftover dried blood spots

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

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

Ethical considerations in blood transfusions: informed consent and religious refusal

Ethical considerations in clinical care of the "VIP".

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

Ethical issues in pediatric genetic testing and screening

Ethics and evidence

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

Evidence-based reviews of newborn-screening opportunities

Expanding newborn screening: process, policy, and priorities

Experiences among Women with Positive Prenatal Expanded Carrier Screening Results

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

Fertility intentions following testing for a BRCA1 gene mutation.

Genetic Contextualism and the Value of a Structured Process

Genetic counseling and ethical issues for autism

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

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

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

IRB practices and policies regarding the secondary research use of biospecimens

Implementing a Central IRB Model in a Multicenter Research Network

Informed Consent for Biobank-Dependent Research

Informed Consent for Genetic and Genomic Research

Informed consent for genetic research

Informed consent for genetic research

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

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

Investigator Experiences and Attitudes About Research With Biospecimens

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

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

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

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

Newborn screening technology: proceed with caution

Newborn screening: ethical, legal, and social implications

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

Outcomes of interest in evidence-based evaluations of genetic tests

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

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

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

Planning the Genome Institute's Future

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

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

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

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

Prenatal diagnosis and the selection of children

Preventing exploitation in pediatric research

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

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

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

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

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

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