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”
Public perspectives on investigative genetic genealogy: Findings from a national focus group study
Large-scale genotype prediction from RNA sequence data necessitates a new ethical and policy framework
Do recent US Supreme Court rulings on patenting of genes and genetic diagnosis affect the practice of genetic screening and diagnosis in prenatal and reproductive care?
Developing context-specific next-generation sequencing policy
Beyond our borders? Public resistance to global genomic data-sharing
Informed consent in genomics and genetic research
Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for adult screening
“A double-edged sword”: A brief history of genomic data governance and genetic researcher perspectives on data sharing
Investigative genetic genealogy practices warranting policy attention: Results of a modified policy Delphi
FIGG at 5: An update on U.S. public perspectives on forensic investigative genetic genealogy five years after its introduction to criminal investigations

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