Amy L. McGuire

J.D., Ph.D.
Leon Jaworski Professor of Biomedical Ethics and Director

Institution(s):

Baylor College of Medicine
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Methods

Mixed Methods

Disciplines

Bioethics
Policy

Areas of Expertise

data sharing
Emerging Technologies
Direct-to-consumer genetic testin
Investigative genetic genealogy
Clinical sequencing

Publications

Consumer perspectives on access to direct‐to‐consumer genetic testing: Role of demographic factors and the testing experience
Parental interest in genomic sequencing of newborns: Enrollment experience from the BabySeq Project
The BabySeq project: Implementing genomic sequencing in newborns
Consumer perspectives on access to direct-to-consumer genetic testing: Role of demographic factors and the testing experience
Informed consent in genomics and genetic research
The clinical sequencing evidence-generating research consortium: Integrating genomic sequencing in diverse and medically underserved populations
Returning a genomic result for an adult-onset condition to the parents of a newborn: Insights from the BabySeq project
Challenging the current recommendations for carrier testing in children
Who’s on third? Regulation of third-party genetic interpretation services
Navigating the research–clinical interface in genomic medicine: Analysis from the CSER Consortium
Perceived benefits, risks, and utility of newborn genomic sequencing in the BabySeq Project
Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience
Psychological outcomes related to exome and genome sequencing result disclosure: A meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies
The genomic medicine integrative research framework: A conceptual framework for conducting genomic medicine research
Social and behavioral research in genomic sequencing: Approaches from the Clinical Sequencing Exploratory Research Consortium Outcomes and Measures Working Group
Ethics and genomic incidental findings
Interpretation of genomic sequencing results in healthy and ill newborns: Results from the BabySeq Project
Raiding the medical communs: An unwelcome side effect of direct-to-consumer personal genome testing
Challenges to building a gene variant commons to assess hereditary cancer risk: Results of a modified policy Delphi panel deliberation
ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing
“Extremely slow and capricious”: A qualitative exploration of genetic researcher priorities in selecting shared data resources
Parents' decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project
Patient and clinician perceptions of precision cardiology care: Findings from the HeartCare study
Data sharing to advance gene-targeted therapies in rare diseases
Key drivers of family-level utility of pediatric genomic sequencing: A qualitative analysis to support preference research
Direct-to-consumer genetic testing: Value and risk
Ethics education for healthcare professionals in the era of ChatGPT and other large language models: Do we still need it?
Families' experiences accessing care after genomic sequencing in the pediatric cancer context: “It's just been a big juggle”

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