Barbara J Evans

Barbara J Evans

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Barbara J Evans

Barbara J Evans

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

J Law Med Ethics 2019 Mar;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
March 2019

Who Owns the Data in a Medical Information Commons?

J Law Med Ethics 2019 Mar;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
March 2019

People-powered data collaboratives: fueling data science with the health-related experiences of individuals.

J Am Med Inform Assoc 2019 Feb;26(2):159-161

Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut, USA.

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http://dx.doi.org/10.1093/jamia/ocy159DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6339513PMC
February 2019

Defending the return of results and data.

Science 2018 12 13;362(6420):1255-1256. Epub 2018 Dec 13.

Law Center, Department of Electrical and Computer Engineering, Center on Biotechnology and Law, University of Houston, Houston, TX 77204, USA.

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http://dx.doi.org/10.1126/science.aaw1851DOI Listing
December 2018

Return of results and data to study participants.

Science 2018 10;362(6411):159-160

Law Center, Department of Electrical and Computer Engineering, Center on Biotechnology and Law, University of Houston, Houston, TX, USA.

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http://dx.doi.org/10.1126/science.aav0005DOI Listing
October 2018

Response to Dreyfus and Sobel.

Authors:
Barbara J Evans

Am J Hum Genet 2018 07;103(1):166-168

Law Center and Department of Electrical and Computer Engineering, University of Houston, Houston, TX 77204, USA. Electronic address:

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http://dx.doi.org/10.1016/j.ajhg.2018.06.004DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6035288PMC
July 2018

Impact of HIPAA's minimum necessary standard on genomic data sharing.

Genet Med 2018 04 14;20(5):531-535. Epub 2017 Sep 14.

Department of Medicine/Medical Genetics, University of Washington, Seattle, Washington, USA.

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http://dx.doi.org/10.1038/gim.2017.141DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5851792PMC
April 2018

HIPAA's Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights.

Authors:
Barbara J Evans

Am J Hum Genet 2018 01;102(1):5-10

Law Center and Department of Electrical and Computer Engineering, University of Houston, Houston, TX 77204, USA. Electronic address:

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http://dx.doi.org/10.1016/j.ajhg.2017.12.004DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5777935PMC
January 2018

Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death.

J Law Med Ethics 2015 ;43(3):476-85

Head of the Division of Medical Genetics and holds the Arno G. Motulsky Chair of Medicine at the University of Washington, Seattle, where she is a Professor of Medicine (Medical Genetics) and Genome Sciences. She received her Ph.D. in Human Genetics at the University of Michigan and her M.D. at the University of Iowa in the Medical Scientists Training Program. She completed her residency in Internal Medicine at the Hospital of the University of Pennsylvania and her fellowship in Medical Genetics at the University of Washington.

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http://dx.doi.org/10.1111/jlme.12290DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617192PMC
January 2017

Power to the People: Data Citizens in the Age of Precision Medicine.

Authors:
Barbara J Evans

Vanderbilt J Entertain Technol Law 2017 ;19(2):243-265

Alumnae College Professor of Law and Director, Center for Biotechnology & Law, University of Houston Law Center.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5673282PMC
January 2017

Economic regulation of next-generation sequencing.

Authors:
Barbara J Evans

J Law Med Ethics 2014 ;42 Suppl 1:51-66

Professor of Law, the George Butler Research Professor, and the Director of the Center for Biotechnology & Law at the University of Houston Law Center.

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https://www.aslme.org/media/downloadable/files/links/0/5/05.
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http://doi.wiley.com/10.1111/jlme.12162
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http://dx.doi.org/10.1111/jlme.12162DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4460792PMC
November 2016

Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of Citizen Science.

Authors:
Barbara J Evans

Am J Law Med 2016 Nov;42(4):651-685

The author is the Alumnae College Professor of Law and Director, Center for Biotechnology & Law, University of Houston Law Center.

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http://dx.doi.org/10.1177/0098858817700245DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664944PMC
November 2016

The FDA and genomic tests--getting regulation right.

N Engl J Med 2015 Jun 27;372(23):2258-64. Epub 2015 May 27.

From the Center for Biotechnology and Law, University of Houston Law Center, Houston (B.J.E.); and the Departments of Bioethics and Humanities (W.B.), Medicine (Medical Genetics) (G.P.J.), and Genome Sciences (G.P.J.), University of Washington, Seattle.

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http://dx.doi.org/10.1056/NEJMsr1501194DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4464691PMC
June 2015

Regulatory changes raise troubling questions for genomic testing.

Genet Med 2014 Nov 25;16(11):799-803. Epub 2014 Sep 25.

1] Department of Medicine/Medical Genetics , University of Washington, Seattle, Washington, USA [2] Department of Genome Sciences, University of Washington, Seattle, Washington, USA.

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http://dx.doi.org/10.1038/gim.2014.127DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4308037PMC
November 2014

Mining the human genome after Association for Molecular Pathology v. Myriad Genetics.

Authors:
Barbara J Evans

Genet Med 2014 Jul 19;16(7):504-9. Epub 2013 Dec 19.

Center for Biotechnology & Law, University of Houston Law Center, Houston, Texas, USA.

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http://dx.doi.org/10.1038/gim.2013.186DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4063888PMC
July 2014

Authority of the Food and Drug Administration to require data access and control use rights in the Sentinel data network.

Authors:
Barbara J Evans

Food Drug Law J 2010 ;65(1):67-112, ii

Health Law & Policy Institute, Houston, TX, USA.

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February 2014

The First Amendment Right to Speak About the Human Genome.

Authors:
Barbara J Evans

Univ Pa J Const Law 2014 Feb;16(3):549-636

Center for Biotechnology & Law, University of Houston Law Center.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4249692PMC
February 2014

Minimizing liability risks under the ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing.

Authors:
Barbara J Evans

Genet Med 2013 Dec 12;15(12):915-20. Epub 2013 Sep 12.

Health Law and Policy Institute, University of Houston Law Center, Houston, Texas, USA.

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http://dx.doi.org/10.1038/gim.2013.135DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892767PMC
December 2013

The ethics of postmarketing observational studies of drug safety under section 505(o)(3) of the Food, Drug, and Cosmetic Act.

Authors:
Barbara J Evans

Am J Law Med 2012 ;38(4):577-606

Health Law & Policy Institute, USA.

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March 2013

Would patient ownership of health data improve confidentiality?

Authors:
Barbara J Evans

Virtual Mentor 2012 Sep 1;14(9):724-32. Epub 2012 Sep 1.

Health Law & Policy Institute, University of Houston Law Center, TX, USA.

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http://dx.doi.org/10.1001/virtualmentor.2012.14.9.pfor1-1209DOI Listing
September 2012

Science and regulation. Regulating direct-to-consumer personal genome testing.

Science 2010 Oct;330(6001):181-2

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.1194006DOI Listing
October 2010

What will it take to reap the clinical benefits of pharmacogenomics?

Authors:
Barbara J Evans

Food Drug Law J 2006 ;61(4):753-94

Indiana University Center for Bioethics, Indiana University Department of Medicine, and Indiana University Law School, Indianapolis, IN, USA.

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December 2006

The unfinished business of U.S. drug safety regulation.

Food Drug Law J 2006 ;61(1):45-63

Program in Pharmacogenomics, Ethics, and Public Policy, Indiana University Center for Bioethics, Indianapolis, IN, USA.

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July 2006

Encouraging translational research through harmonization of FDA and common rule informed consent requirements for research with banked specimens.

J Leg Med 2006 Jun;27(2):119-66

Program in Pharmacogenomics, Ethics, and Public Policy, Indiana University Center for Bioethics, Indianapolis 46202, USA.

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http://dx.doi.org/10.1080/01947640600716366DOI Listing
June 2006

Inconsistent regulatory protection under the U.S. Common Rule.

Authors:
Barbara J Evans

Camb Q Healthc Ethics 2004 ;13(4):366-79

Center for Bioethics, Indiana University/Purdue University, Indianapolis, USA.

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February 2005

Creating incentives for genomic research to improve targeting of therapies.

Nat Med 2004 Dec;10(12):1289-91

Pharmacogenomics, Ethics, and Public Policy Program, Indiana University Center for Bioethics, Indianapolis, USA.

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http://dx.doi.org/10.1038/nm1204-1289DOI Listing
December 2004

Type 2 diabetes mellitus in youth.

J Sch Nurs 2003 Aug;19(4):195-203

Department of Clinical Nutrition, Penn State Milton S. Hershey Medical Center, Hershey, PA, USA.

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http://dx.doi.org/10.1177/10598405030190040301DOI Listing
August 2003

Type 2 diabetes mellitus: issues for the medical care of pediatric and adult patients.

South Med J 2002 Sep;95(9):992-1000

Department of Internal Medicine, Milton S. Hershey Medical Center, Pennsylvania State University, Hershey 17033-0850, USA.

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September 2002

Type 2 diabetes mellitus in adolescents.

Adolesc Med 2002 Feb;13(1):1-12, v

Department of Pediatrics, Pennsylvania State University College of Medicine, Milton S. Hershey Medical Center, Hershey, 17033-0850, USA.

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February 2002