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Author Details

Debra J H Mathews
Carlsberg Laboratory, Case Western Reserve University, Johns Hopkins Medicine, Johns Hopkins School of Medicine, Johns Hopkins School of Public Health, Johns Hopkins University, National Academy of Sciences, Pennsylvania State University, Presidential Commission for the Study of Bioethical Issues
0000-0002-4897-7617
1999
63
17
PMIDPaper TitleJournal TitlePublished Year
37360148Designing robots that do no harm: understanding the challenges of Ethics <i>for</i> Robots.AI Ethics2023
37126351Designing Health Care Artificial Intelligence That Comports With the Values of Patients-Children Are People Whose Voices Must Be Heard.JAMA Netw Open2023
34383228Patients' Reactions to Letters Communicating Collateral Findings of Pragmatic Clinical Trials: a National Web-Based Survey.J Gen Intern Med2022
35709280Get law enforcement out of biospecimen authentication.Science2022
35417635Governance of Emerging Technologies in Health and Medicine - Creating a New Framework.N Engl J Med2022
35042809Ethical, legal, and social issues in the Earth BioGenome Project.Proc Natl Acad Sci U S A2022
35058451Voluntary workplace genomic testing: wellness benefit or Pandora's box?NPJ Genom Med2022
32700788Whether, when, and how to communicate genetic risk to minors: 'I wanted more information but I think they were scared I couldn't handle it'.J Genet Couns2021
33815477Employees' Views and Ethical, Legal, and Social Implications Assessment of Voluntary Workplace Genomic Testing.Front Genet2021
34468209Microsatellite Markers in Biobanking: A New Multiplexed Assay.Biopreserv Biobank2021
34600345Identification and management of pragmatic clinical trial collateral findings: A current understanding and directions for future research.Healthc (Amst)2021
34329595Patients' perspectives on the derivation and use of organoids.Stem Cell Reports2021
34065005Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions.J Pers Med2021
34263019Ethical Issues in Genetics and Infectious Diseases Research: An Interdisciplinary Expert Review.Ethics Med Public Health2021
34048692ISSCR Guidelines for Stem Cell Research and Clinical Translation: The 2021 update.Stem Cell Reports2021
34048690Human embryo research, stem cell-derived embryo models and in vitro gametogenesis: Considerations leading to the revised ISSCR guidelines.Stem Cell Reports2021
32838576Engaging ALS patients and caregivers (the ALS research ambassadors) to help design the REFINE-ALS biomarker study.Amyotroph Lateral Scler Frontotemporal Degener2021
31492767Patient Preferences for Use of Archived Biospecimens from Oncology Trials When Adequacy of Informed Consent Is Unclear.Oncologist2020
34667872Stakeholder perspectives regarding pragmatic clinical trial collateral findings.Learn Health Syst2020
31896323Response to Open Peer Commentaries on "Ethics and Collateral Findings in Pragmatic Clinical Trials".Am J Bioeth2020
31896322Ethics and Collateral Findings in Pragmatic Clinical Trials.Am J Bioeth2020
33168072Genomics in the era of COVID-19: ethical implications for clinical practice and public health.Genome Med2020
33095048Reactions to the National Academies/Royal Society Report on <i>Heritable Human Genome Editing</i>.CRISPR J2020
32815061Patients' Views About the Disclosure of Collateral Findings in Pragmatic Clinical Trials: a Focus Group Study.J Gen Intern Med2020
32228385Artificial Intelligence in Service of Human Needs: Pragmatic First Steps Toward an Ethics for Semi-Autonomous Agents.AJOB Neurosci2020
32568103Family Communication Patterns and Challenges of Huntington's Disease Risk, the Decision to Pursue Presymptomatic Testing, and Test Results.J Huntingtons Dis2020
31343905Ethical Framework for Including Research Biopsies in Oncology Clinical Trials: American Society of Clinical Oncology Research Statement.J Clin Oncol2019
31182655Secondary Use of Patient Tissue in Cancer Biobanks.Oncologist2019
29214968The Therapeutic "Mis"conception: An Examination of its Normative Assumptions and a Call for its Revision.Camb Q Healthc Ethics2018
29967967Perspectives on Genetic Testing and Return of Results from the First Cohort of Presymptomatically Tested Individuals At Risk of Huntington Disease.J Genet Couns2018
31021213Solidarity in the Age of CRISPR.CRISPR J2018
30393972Risk perception before and after presymptomatic genetic testing for Huntington's disease: Not always what one might expect.Mol Genet Genomic Med2018
29471711Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?J Empir Res Hum Res Ethics2018
28272539Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease.Eur J Hum Genet2017
27417953Physicians' perspectives regarding pragmatic clinical trials.J Comp Eff Res2016
27649827A Conceptual Model for the Translation of Bioethics Research and Scholarship.Hastings Cent Rep2016
26166479The Genetic Basis of Mendelian Phenotypes: Discoveries, Challenges, and Opportunities.Am J Hum Genet2015
26632362Genome Editing Technologies and Human Germline Genetic Modification: The Hinxton Group Consensus Statement.Am J Bioeth2015
26272997Freedom and Responsibility in Synthetic Genomics: The Synthetic Yeast Project.Genetics2015
26560284CRISPR: A path through the thicket.Nature2015
24045771Language matters.J Med Ethics2014
24865371Beyond consent in research. Revisiting vulnerability in deep brain stimulation for psychiatric disorders.Camb Q Healthc Ethics2014
24705284Revisiting respect for persons in genomic research.Genes (Basel)2014
24388172Patients' attitudes toward the donation of biological materials for the derivation of induced pluripotent stem cells.Cell Stem Cell2014
23642360Patents and misplaced angst: lessons for translational stem cell research from genomics.Cell Stem Cell2013
23933773A comparative analysis of the governance and use of residual dried blood spots from state newborn screening programs and neonatal biobanks.J Empir Res Hum Res Ethics2013
21311015Access to stem cells and data: persons, property rights, and scientific progress.Science2011
21999266Promoting justice in stem cell intellectual property.Regen Med2011
22200138Deep brain stimulation, personal identity and policy.Int Rev Psychiatry2011
18728679The role of animal models in evaluating reasonable safety and efficacy for human trials of cell-based interventions for neurologic conditions.J Cereb Blood Flow Metab2009
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Collaborators

Johns Hopkins University, Berman Institute of Bioethics
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Co-authored papers 8
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Berman Institute of Bioethics, Johns Hopkins University
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Johns Hopkins University.
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The Francis Crick Institute
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The Center for Law and the Biosciences, Stanford University
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Berman Institute of Bioethics, Johns Hopkins University
Co-authored papers 5
Berman Institute of Bioethics, Johns Hopkins University
Co-authored papers 4
New York University Grossman School of Medicine
Co-authored papers 4
University of Manchester
Co-authored papers 4
University of California irvine
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Berman Institute of Bioethics, Johns Hopkins University
Co-authored papers 4
The Johns Hopkins University School of Medicine
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Phoebe R Berman Bioethics Institute
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Harvard Medical School and McLean Hospital
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Johns Hopkins University School of Medicine Abarbanel Mental Health Centre
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Johns Hopkins Hospital
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IRCCS Casa Sollievo della Sofferenza, University of Milano-Bicocca
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Massachusetts General Hospital, Harvard Medical School
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Johns Hopkins University
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Marcus Center for Cellular Cures, Duke University School of Medicine
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New York Presbyterian Hospital, Columbia University Medical Center
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National Institutes of Health, National Institute of Neurological Diseases and Stroke
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