Publications by authors named "Amy L McGuire"

100Publications

Direct-to-Consumer Genetic Testing: Value and Risk.

Annu Rev Med 2020 Jul 31. Epub 2020 Jul 31.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA; email:

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http://dx.doi.org/10.1146/annurev-med-070119-114727DOI Listing
July 2020

Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.

J Law Med Ethics 2020 03;48(1):69-86

Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; and Professor of Medicine at the University of Minnesota. She is also Chair of the University's Consortium on Law and Values in Health, Environment & the Life Sciences. She is a Principal Investigator on an NIH-supported project on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application" (NHGRI/NCI # R01HG008605; Wolf, Clayton, Lawrenz, PIs). Pilar N. Ossorio, Ph.D., J.D., is Professor of Law and Bioethics at the University of Wisconsin-Madison, where she is on the faculties of the Law School and the Department of Medical History and Bioethics at the Medical School. She is Ethics Scholar-in-Residence at the Morgridge Institute for Research, Co-Director of UW's Law and Neuroscience Program, a faculty member in the UW Masters in Biotechnology Studies program, and Program Faculty in the Graduate Program in Population Health. Susan A. Berry, M.D., is Division Director for Genetics and Metabolism in the Department of Pediatrics at the University of Minnesota. She is a Professor in the Departments of Pediatrics, Ophthalmology and Genetics, Cell Biology and Development. She is a member of the Minnesota Department of Health Newborn Screening Advisory Committee, a Fellow of the American Academy of Pediatrics, and a Fellow of the American College of Medical Genetics. Henry T. Greely, J.D., is the Deane F. and Kate Edelman Johnson Professor of Law and Professor, by courtesy, of Genetics at Stanford University. He chairs the California Advisory Committee on Human Stem Cell Research and the steering committee of the Stanford University Center for Biomedical Ethics, and directs the Stanford Center for Law and the Biosciences and the Stanford Program in Neuroscience and Society. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at the Baylor College of Medicine. She served on the National Advisory Council for Human Genome Research 2011-15 and is immediate past-President of the Association of Bioethics Program Directors. Michelle A. Penny, Ph.D., is Head of the Translational Genome Sciences Group at Biogen. She is Co-Chair of the National Academy Roundtable on Genomics and Precision Health and the Industry Pharmacogenomics Working Group. Sharon F. Terry, M.A., is President and Chief Executive Officer of Genetic Alliance and co-founder of the Genetic Alliance Registry and Biobank. She has served in a leadership role on organizations including the Precision Medicine Initiative Cohort Advisory Panel; Cures Acceleration Network Review Board and Advisory Council, National Center for Accelerating Translation Science, NIH; National Academy Roundtable on Genomics and Precision Health; Global Alliance for Genomics and Health; and International Rare Disease Research Consortium Executive Committee. Organizations are listed here for author identification only.

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http://dx.doi.org/10.1177/1073110520916996DOI Listing
March 2020

A Right to Privacy and Confidentiality: Ethical Medical Care for Patients in United States Immigration Detention.

J Law Med Ethics 2020 03;48(1):161-168

Amanda M. Gutierrez, M.P.H., is a Research Assistant at the Baylor College of Medicine Center for Medical Ethics and Health Policy in Houston, Texas. Jacob D. Hofstetter, M.G.P.S., is a Research and Policy Associate at the Massachusetts Appleseed Center for Law and Justice in Boston, Massachusetts. Emma Dishner, M.D., M.P.H., recently graduated from her Infectious Diseases fellowship from Baylor College of Medicine in Houston, Texas and will soon begin working with North Texas Infectious Diseases Consultants. Elizabeth Chiao, M.D., M.P.H., is a Professor of Medicine at Baylor College of Medicine in Houston, Texas. Dilreet Rai, M.D., is a hospitalist at the Michael E. Debakey VA Medical Center in Houston, Texas. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors.

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http://dx.doi.org/10.1177/1073110520917004DOI Listing
March 2020

Data Sharing in the Context of Health-Related Citizen Science.

J Law Med Ethics 2020 Mar;48(1_suppl):167-177

Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors.

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http://dx.doi.org/10.1177/1073110520917044DOI Listing
March 2020

The case for implementing sustainable routine, population-level genomic reanalysis.

Genet Med 2020 Apr 12;22(4):815-816. Epub 2019 Dec 12.

Center for Genomic Medicine, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.

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http://dx.doi.org/10.1038/s41436-019-0719-3DOI Listing
April 2020

Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?

BMC Med Ethics 2019 11 21;20(1):84. Epub 2019 Nov 21.

Baylor College of Medicine, Center for Medical Ethics and Health Policy, 1 Baylor Plaza, Houston, TX, 77030, USA.

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http://dx.doi.org/10.1186/s12910-019-0419-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6868686PMC
November 2019

Learning Health System - Moving from Ethical Frameworks to Practical Implementation.

J Law Med Ethics 2019 09;47(3):454-458

Stephanie R. Morain, M.P.H, Ph.D., is an Assistant Professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She received an A.B. in Biology and History, Government, and Law from Lafayette College, an M.P.H. from Columbia University, and a Ph.D. from Harvard University. Mary A. Majumder, J.D., Ph.D.,is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. She received an A.B. from Bryn Mawr College, a J.D. from Yale Law School, and a Ph.D. from Rice. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She received a B.A. in psychology from the University of Pennsylvania, a J.D. from the University of Houston, and a Ph.D. from the Institute for Medical Humanities at the University of Texas Medical Branch.

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http://dx.doi.org/10.1177/1073110519876180DOI Listing
September 2019

Device Removal Following Brain Implant Research.

Neuron 2019 09;103(5):759-761

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA. Electronic address:

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https://linkinghub.elsevier.com/retrieve/pii/S08966273193073
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http://dx.doi.org/10.1016/j.neuron.2019.08.024DOI Listing
September 2019

Who's on third? Regulation of third-party genetic interpretation services.

Genet Med 2020 01 12;22(1):4-11. Epub 2019 Aug 12.

Baylor College of Medicine, Center for Medical Ethics and Health Policy, Houston, TX, USA.

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http://dx.doi.org/10.1038/s41436-019-0627-6DOI Listing
January 2020

Clarify the HIPAA right of access to individuals' research data.

Nat Biotechnol 2019 08;37(8):850-852

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.

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http://dx.doi.org/10.1038/s41587-019-0190-3DOI Listing
August 2019

Responsibility, culpability, and parental views on genomic testing for seriously ill children.

Genet Med 2019 12 12;21(12):2791-2797. Epub 2019 Jun 12.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.

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http://dx.doi.org/10.1038/s41436-019-0570-6DOI Listing
December 2019

Who Owns the Data in a Medical Information Commons?

J Law Med Ethics 2019 03;47(1):62-69

Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. She received a B.A. in psychology from the University of Pennsylvania, a J.D. from the University of Houston, and a Ph.D. from the Institute for Medical Humanities at the University of Texas Medical Branch. Jessica L. Roberts, J.D., is the Alumnae College Professor in Law at the University of Houston Law Center and a past recipient of a Greenwall Faculty Scholar grant. She earned a B.A. in Political Science from the University of Southern California and a J.D. from Yale Law School. Sean Aas, Ph.D., M.A., is a Senior Research Scholar at the Kennedy Institute of Ethics and an Assistant Professor in the Philosophy Department at Georgetown. He is also, presently, a Greenwall Foundation Faculty Scholar. He earned a B.A. and B.S. in Philosophy and Mathematics at The Evergreen State College, a M.A. in Philosophy from Georgia State University, and a Ph.D. in Philosophy from Brown University. Barbara J. Evans, MS, Ph.D., J.D., LL.M., is the Mary Ann and Lawrence E. Faust Professor of Law and Director of the Center for Biotechnology & Law at the University of Houston Law Center and holds a joint appointment as Professor of Electrical and Computer Engineering at the UH Cullen College of Engineering. She holds a B.S.E.E. from the University of Texas at Austin, M.S. and Ph.D. degrees from Stanford University, a J.D. from Yale Law School, and an LL.M. in Health Law from University of Houston.

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http://dx.doi.org/10.1177/1073110519840485DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6727646PMC
March 2019

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.

J Law Med Ethics 2019 03;47(1):70-87

Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policymakers. Dierdre Gilmore, M.A., is a Senior Researcher at the American Institutes for Research. Gilmore earned a MA in Medical Anthropology at the University of London. Jennifer Richmond, M.S.P.H., is a Research Associate at the American Institutes for Research and a doctoral student in the Department of Health Behavior at the University of North Carolina at Chapel Hill (UNC-CH) Gillings School of Global Public Health. Zachary Smith is a Research Assistant at the American Institutes for Research. Rikki Mangrum, M.L.S., is a Senior Research Scientist at the American Institutes for Research. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. She serves as Director of the UCSF Program in Bioethics. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors.

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http://dx.doi.org/10.1177/1073110519840486DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6730638PMC
March 2019

Characterizing the Biomedical Data-Sharing Landscape.

J Law Med Ethics 2019 03;47(1):21-30

Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine.

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http://dx.doi.org/10.1177/1073110519840481DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6730647PMC
March 2019

Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.

J Law Med Ethics 2019 03;47(1):12-20

Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Jessica Bardill, Ph.D., is an Assistant Professor of Indigenous Canadian Literatures and Cultures at Concordia University in Montreal, Quebec. Juli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Eric Boerwinkle, Ph.D., is the Dean of the University of Texas Health Science Center at Houston, School of Public Health and the Associate Director, Human Genome Sequencing Center at Baylor College of Medicine. Tania Bubela, Ph.D., J.D., is the Dean of the Faculty of Health Sciences at Simon Fraser University and a Fellow of the Canadian Academy of Health Sciences. Patricia Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses Outcomes at Geisinger National Precision Health, where she focuses systems and policymakers. Barbara Evans, MS, Ph.D., J.D., LL.M., is the Mary Ann and Lawrence E. Faust Professor of Law and Director of the Center for Biotechnology & Law at the University of Houston Law Center and holds a joint appointment as Professor of Electrical and Computer Engineering at the UH Cullen College of Engineering. Nanibaa' A. Garrison, Ph.D. (Navajo), is an Assistant Professor at the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and Research Institute and at the Department of Pediatrics at the University of Washington School of Medicine. David Glazer is an engineering director at Verily Life Sciences, where he helps life science organizations use cloud computing to accelerate and scale their work with big data. Melissa M. Goldstein, J.D., is an Associate Professor in the Department of Health Policy and Management at the Milken Institute School of Public Health at the George Washington University. Henry T. Greely, J.D., is the Deane F. and Kate Edelman Johnson Professor of Law and a professor (by courtesy) of Genetics at Stanford University, where he directs the Center for Law and the Biosciences. He is President of the International Neuroethics Society, co-chair of the Neuroethics Work Group of the NIH BRAIN Initiative, and a member of the National Academies' Committee on Science, Technology, and Law. Scott D. Kahn, Ph.D., is the Chief Information Officer at LunaDNA where he is responsible for all informatics and data science strategy. Bartha M. Knoppers, Ph.D., (Comparative Medical Law), is a Full Professor, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy of the Faculty of Medicine at McGill University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. She also serve as Director of the UCSF Program in Bioethics. J. Mark Lambright, M.B.A., is the Chairman, Trident Advisors, LLC - CEO (Interim), Private Access, Inc. Mark Lambright has been a senior executive of a number of healthcare and technology companies ranging in size from startup to multi-billion in revenue. John Mattison, M.D., is Assistant Medical Director, KP, SCAL, Chief Health Information Officer. Founder of CDA/CCD (XML standard for healthcare interoperability). Co-Editor of Healthcare Information Technology (2017 McGraw Hill). Christopher J. O'Donnell, M.D., M.P.H., is Chief, Cardiology Section and Director, Center for Population Genomics, of the Boston VA Healthcare System and co-Principal Investigator (Chief Scientist) of the national VA Million Veteran Program; and is VA Contact Principal Investigator of the NIH All of Us Research Program. He is also a faculty member of the Department of Medicine, Brigham and Women's Hospital and Associate Professor of Medicine, Harvard Medical School. Arti K. Rai, J.D., is the Elvin R. Latty Professor of Law and co-Director of the Center for Innovation Policy at Duke Law. Laura L. Rodriguez, Ph.D., is the Director of the Division of Policy, Communications, and Education at the National Human Genome Research Institute. Tania Simoncelli, M.S., is the Director of Science Policy at the Chan Zuckerberg Initiative. Formerly Executive Director, Count Me In at the Broad Institute, Assistant Director of Forensic Science and Biomedical Innovation, White House Office of Science & Technology Policy, and Science Advisor to the American Civil Liberties Union. Sharon F. Terry, M.A., is the president and CEO of Genetic Alliance. Adrian Thorogood, B.C.L./LL.B., is a lawyer and Academic Associate at the Centre of Genomics and Policy at McGill University in Montreal, Canada. He manages the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health. Michael S. Watson, M.S., Ph.D., is the Executive Director, American College of Medical Genetics and Genomics and ACMG Foundation for Genetic and Genomic Medicine and an Adjunct Professor of Pediatrics at Washington University School of Medicine. John T. Wilbanks is the Chief Commons Officer at Sage Bionetworks, and co-PI on awards for AllofUs Research Program, ELSI Issues in Unregulated Mobile Research, CTSA Center for Data To Health. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.

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http://dx.doi.org/10.1177/1073110519840480DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6738947PMC
March 2019

What is a Medical Information Commons?

J Law Med Ethics 2019 03;47(1):41-50

Juli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.

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http://dx.doi.org/10.1177/1073110519840483DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6730652PMC
March 2019

Genomic Data-Sharing Practices.

J Law Med Ethics 2019 03;47(1):31-40

Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU. Jill O. Robinson, M.A., is the Research Manager at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. She received her B.A. in sociology and political science and her M.A. in sociology from the University of Houston. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine.

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http://dx.doi.org/10.1177/1073110519840482DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6730666PMC
March 2019

Introduction: Sharing Data in a Medical Information Commons.

J Law Med Ethics 2019 03;47(1):7-11

Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors.

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http://journals.sagepub.com/doi/10.1177/1073110519840479
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http://dx.doi.org/10.1177/1073110519840479DOI Listing
March 2019

Interpretation of Genomic Sequencing Results in Healthy and Ill Newborns: Results from the BabySeq Project.

Am J Hum Genet 2019 01;104(1):76-93

Harvard Medical School, Boston, MA 02115, USA; Division of Genetics and Genomics, The Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA 02115, USA. Electronic address:

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http://dx.doi.org/10.1016/j.ajhg.2018.11.016DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6323417PMC
January 2019

Challenging the Current Recommendations for Carrier Testing in Children.

Pediatrics 2019 01;143(Suppl 1):S27-S32

Division of Genetics and Genomics and The Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, Massachusetts;

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http://dx.doi.org/10.1542/peds.2018-1099FDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6433123PMC
January 2019

Exome sequencing disclosures in pediatric cancer care: Patterns of communication among oncologists, genetic counselors, and parents.

Patient Educ Couns 2019 04 12;102(4):680-686. Epub 2018 Nov 12.

Department of Medicine, Baylor College of Medicine, 6620 Main St., Houston, TX 77030, United States; Department of Communication, Texas A&M University, TAMU 4234, College Station, TX 77843, United States; Center for Innovation in Healthcare Quality, Effectiveness, & Safety, Michael E. DeBakey Veterans Affairs Medical Center, 2450 Holcombe Blvd., Suite 01Y, Houston, TX 77021, United States. Electronic address:

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http://dx.doi.org/10.1016/j.pec.2018.11.007DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6440863PMC
April 2019

Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique.

PLoS Biol 2018 10 2;16(10):e2006906. Epub 2018 Oct 2.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, United States of America.

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http://dx.doi.org/10.1371/journal.pbio.2006906DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6168121PMC
October 2018

Citizen science, public policy.

Science 2018 07;361(6398):134-136

Baylor College of Medicine, Center for Medical Ethics and Health Policy, 1 Baylor Plaza, Houston, TX 77030, USA.

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http://www.sciencemag.org/lookup/doi/10.1126/science.aar8379
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http://dx.doi.org/10.1126/science.aar8379DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6534494PMC
July 2018

Genealogy databases and the future of criminal investigation.

Science 2018 06;360(6393):1078-1079

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.

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http://dx.doi.org/10.1126/science.aau1083DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542732PMC
June 2018

Constraints on gene patent protection fuel secrecy concerns: a qualitative study.

J Law Biosci 2017 Dec 16;4(3):542-564. Epub 2017 Nov 16.

The University of Texas, School of Public Health, 1200 Pressler St., Houston TX 77030, USA.

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http://dx.doi.org/10.1093/jlb/lsx034DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5965503PMC
December 2017

HEADS: Social Media Screening in Adolescent Primary Care.

Pediatrics 2018 06 1;141(6). Epub 2018 May 1.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas

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http://pediatrics.aappublications.org/lookup/doi/10.1542/ped
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http://dx.doi.org/10.1542/peds.2017-3655DOI Listing
June 2018

Continued access to investigational brain implants.

Nat Rev Neurosci 2018 06;19(6):317-318

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.

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http://dx.doi.org/10.1038/s41583-018-0004-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6020153PMC
June 2018

Alienation, Quality of Life, and DBS for Depression.

AJOB Neurosci 2018 25;9(4):223-225. Epub 2019 Feb 25.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, 1 Baylor Plaza, Suite 310D, Houston, TX 77030-3411.

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http://dx.doi.org/10.1080/21507740.2018.1561543DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6474337PMC
February 2019

Do privacy and security regulations need a status update? Perspectives from an intergenerational survey.

PLoS One 2017 19;12(9):e0184525. Epub 2017 Sep 19.

Institute for Bioethics, Health Policy, and Law, University of Louisville School of Medicine, Louisville, Kentucky, United States of America.

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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184525PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5604938PMC
October 2017

The Impact of Whole-Genome Sequencing on the Primary Care and Outcomes of Healthy Adult Patients: A Pilot Randomized Trial.

Ann Intern Med 2017 08 27;167(3):159-169. Epub 2017 Jun 27.

From VA Boston Healthcare System, Brigham and Women's Hospital, Harvard Medical School, and Partners HealthCare Personalized Medicine, Boston, Massachusetts; Baylor College of Medicine and UTHealth School of Public Health, Houston, Texas; Oregon Health & Science University, Portland, Oregon; Broad Institute of MIT and Harvard, Cambridge, Massachusetts; and Geisinger Health System, Danville, Pennsylvania.

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http://dx.doi.org/10.7326/M17-0188DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5856654PMC
August 2017

Sharing data under the 21st Century Cures Act.

Genet Med 2017 12 25;19(12):1289-1294. Epub 2017 May 25.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.

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http://dx.doi.org/10.1038/gim.2017.59DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6708407PMC
December 2017

Myriad take two: Can genomic databases remain secret?

Science 2017 05;356(6338):586-587

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.

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http://dx.doi.org/10.1126/science.aal3224DOI Listing
May 2017

Moving beyond Bermuda: sharing data to build a medical information commons.

Genome Res 2017 06 3;27(6):897-901. Epub 2017 Apr 3.

Baylor College of Medicine, Houston, Texas 77030, USA.

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http://genome.cshlp.org/lookup/doi/10.1101/gr.216911.116
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http://dx.doi.org/10.1101/gr.216911.116DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5453323PMC
June 2017

Should you profit from your genome?

Nat Biotechnol 2017 01;35(1):18-20

Baylor College of Medicine, Houston, Texas, USA.

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http://www.nature.com/doifinder/10.1038/nbt.3757
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January 2017

Beyond Our Borders? Public Resistance to Global Genomic Data Sharing.

PLoS Biol 2016 Nov 2;14(11):e2000206. Epub 2016 Nov 2.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, United States of America.

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https://dx.plos.org/10.1371/journal.pbio.2000206
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http://dx.doi.org/10.1371/journal.pbio.2000206DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5091881PMC
November 2016

Ethical and Legal Challenges Associated with Public Molecular Autopsies.

J Law Med Ethics 2016 06;44(2):309-18

Quianta L. Moore, M.D., J.D., is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and a Scholar in Health Policy at the Baker Institute for Public Policy at Rice University. She has a M.D. from Baylor College of Medicine and a J.D. from the University of Houston Law Center. Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She has a J.D. from Yale Law School and a Ph.D. from Rice University. Lindsey K. Rutherford, J.D., holds the title of Assistant County Attorney for Harris County, Texas and serves as the General Counsel to the Chief Medical Examiner and Harris County Institute of Forensic Sciences. She obtained her B.S. degree in Biology from Texas A&M University, her J.D. degree from the University of Houston Law Center and is licensed to practice law in the state of Texas. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She received her J.D. from the University of Houston Law Center and Ph.D. from the University of Texas Medical School at Galveston.

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http://dx.doi.org/10.1177/1073110516654124DOI Listing
June 2016

Return of individual genomic research results: what do consent forms tell participants?

Eur J Hum Genet 2016 11 22;24(11):1524-1529. Epub 2016 Jun 22.

Center for Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.

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http://dx.doi.org/10.1038/ejhg.2016.76DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5110071PMC
November 2016

Developing context-specific next-generation sequencing policy.

Nat Biotechnol 2016 05;34(5):466-70

Baylor College of Medicine, Center for Medical Ethics and Health Policy, Houston, Texas, USA.

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http://dx.doi.org/10.1038/nbt.3545DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5117622PMC
May 2016

Persistent confusion and controversy surrounding gene patents.

Nat Biotechnol 2016 Feb;34(2):145-7

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.

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http://www.nature.com/articles/nbt.3470
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5094359PMC
February 2016

Potential Psychosocial Risks of Sequencing Newborns.

Pediatrics 2016 Jan;137 Suppl 1:S24-9

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas

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http://pediatrics.aappublications.org/cgi/doi/10.1542/peds.2
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January 2016

Legal Barriers to Adolescent Participation in Research About HIV and Other Sexually Transmitted Infections.

Am J Public Health 2016 Jan 12;106(1):40-4. Epub 2015 Nov 12.

Quianta L. Moore, Amy L. McGuire, and Mary A. Majumder are with the Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX. Quianta L. Moore is also with the Baker Institute for Public Policy, Rice University, Houston. Mary E. Paul is with the Department of Pediatrics, Retrovirology, Baylor College of Medicine.

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http://dx.doi.org/10.2105/AJPH.2015.302940DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4695940PMC
January 2016

Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject.

J Law Med Ethics 2015 ;43(3):529-37

Board-certified medical geneticist who focuses on laboratory and clinical research related to cancer susceptibility. She is a Professor in the departments of Pediatrics and Molecular and Human Genetics at Baylor College of Medicine. She is the Director of the Cancer Genetics and Genomics Program at Texas Children's Cancer and Hematology Centers. She received her M.D. and Ph.D. from Harvard University, Boston, MA.

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http://dx.doi.org/10.1111/jlme.12295DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617204PMC
January 2017

Pregnant patients' risk perception of prenatal test results with uncertain fetal clinical significance: ultrasound versus advanced genetic testing.

Prenat Diagn 2015 Dec 18;35(12):1213-7. Epub 2015 Sep 18.

Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, TX, USA.

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http://dx.doi.org/10.1002/pd.4680DOI Listing
December 2015

Secondary findings and carrier test frequencies in a large multiethnic sample.

Genome Med 2015 13;7(1):54. Epub 2015 Jun 13.

The Human Genome Sequencing Center, Baylor College of Medicine, Houston, TX 77030 USA ; Human Genetics Center, University of Texas Health Science Center at Houston, Houston, TX 77030 USA.

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http://dx.doi.org/10.1186/s13073-015-0171-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4507324PMC
July 2015

It depends whose data are being shared: considerations for genomic data sharing policies.

J Law Biosci 2015 Nov 21;2(3):697-704. Epub 2015 Jul 21.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.

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http://dx.doi.org/10.1093/jlb/lsv030DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5034404PMC
November 2015

GINA, genetic discrimination, and genomic medicine.

N Engl J Med 2015 Jan;372(5):397-9

From the Division of Genetics, Brigham and Women's Hospital (R.C.G., D.L.); Partners Personalized Medicine (R.C.G.); the Broad Institute (R.C.G.); and Harvard Medical School (R.C.G.) - all in Boston; and the Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston (A.L.M.).

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http://www.nejm.org/doi/10.1056/NEJMp1404776
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January 2015

How behavioral economics can help to avoid 'The last mile problem' in whole genome sequencing.

Genome Med 2015 22;7(1). Epub 2015 Jan 22.

Fuqua School of Business and Sanford School of Public Policy, Duke University, Fuqua Drive, Durham, NC 27708 USA.

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http://dx.doi.org/10.1186/s13073-015-0132-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4302430PMC
January 2015

Overcoming the reimbursement barriers for clinical sequencing.

JAMA 2014 Nov;312(18):1857-8

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5087268PMC
http://dx.doi.org/10.1001/jama.2014.14915DOI Listing
November 2014

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients.

Genome Med 2014 17;6(9):69. Epub 2014 Sep 17.

Texas Children's Cancer Center, 6701 Fannin Street #1400, Houston, TX 77030 USA ; Department of Pediatrics, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030 USA ; Dan L. Duncan Cancer Center, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030 USA ; Human Genome Sequencing Center, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030 USA ; Department of Molecular and Human Genetics, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030 USA.

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http://genomemedicine.com/content/6/9/69
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http://dx.doi.org/10.1186/s13073-014-0069-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4195891PMC
October 2014

Development of the clinical next-generation sequencing industry in a shifting policy climate.

Nat Biotechnol 2014 Oct;32(10):980-2

Genetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC, USA.

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http://dx.doi.org/10.1038/nbt.3030DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5125294PMC
October 2014

Clinical integration of next generation sequencing: a policy analysis.

J Law Med Ethics 2014 ;42 Suppl 1:5-8

Director of Research at the Genetics and Public Policy Center at Johns Hopkins University in Washington, D.C.

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https://www.aslme.org/media/downloadable/files/links/0/3/03.
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http://doi.wiley.com/10.1111/jlme.12158
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http://dx.doi.org/10.1111/jlme.12158DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5095695PMC
November 2016

Open access data sharing in genomic research.

Genes (Basel) 2014 Aug 29;5(3):739-47. Epub 2014 Aug 29.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.

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http://www.mdpi.com/2073-4425/5/3/739
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http://dx.doi.org/10.3390/genes5030739DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4198928PMC
August 2014

Can I be sued for that? Liability risk and the disclosure of clinically significant genetic research findings.

Genome Res 2014 May 27;24(5):719-23. Epub 2014 Mar 27.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA;

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http://genome.cshlp.org/cgi/doi/10.1101/gr.170514.113
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http://dx.doi.org/10.1101/gr.170514.113DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4009601PMC
May 2014