- Assistant Director for Science Programs
Berman Institute of Bioethics
- Associate Professor
Department of Genetic Medicine, Johns Hopkins University School of Medicine
Debra JH Mathews, PhD, MA, is the Assistant Director for Science Programs for the Johns Hopkins Berman Institute of Bioethics, and an Associate Professor in the Department of Genetic Medicine, Johns Hopkins University School of Medicine. As the Assistant Director for Science Programs, Dr. Mathews is responsible for overseeing the Stem Cell Policy and Ethics program and the Program in Ethics and Brain Sciences, as well as other bench research-related endeavors in the Berman Institute. She also runs the Genomics and Society Mentorship Program and serves as the Chair of the Berman Institute’s Inclusion, Diversity, Anti-Racism, and Equity (IDARE) Committee. Within the Institute for Assured Autonomy (IAA), Dr. Mathews serves as the Ethics & Governance Lead. In this role, she leads work focused on the ethical, societal, and governance implications of autonomous systems, and identifies opportunities across IAA for the integration of ethics and governance work and priorities.
Dr. Mathews’s academic work focuses on ethics and policy issues raised by emerging technologies, with particular focus on genetics, stem cell science, neuroscience, synthetic biology, and artificial intelligence. Dr. Mathews is a member of the steering committee of The Hinxton Group, an international collective of scientists, ethicists, policymakers and others, interested in ethical and well-regulated science, and whose work focuses primarily on stem cell research. She has been an active member of the International Neuroethics Society since 2006 and has served on the Society’s Board of Directors since 2015. In addition to her academic work, Dr. Mathews has spent time at the Genetics and Public Policy Center, the US Department of Health and Human Services, the Presidential Commission for the Study of Bioethical Issues, and the National Academy of Medicine working in various capacities on science policy.
Dr. Mathews earned her PhD in genetics from Case Western Reserve University, as well as a concurrent Master’s in bioethics. She completed a Post-Doctoral Fellowship in genetics at Johns Hopkins, and the Greenwall Fellowship in Bioethics and Health Policy at Johns Hopkins and Georgetown Universities.
- Ethics and policy issues raised by emerging biotechnologies, with particular focus on genetics, stem cell science, neuroscience and synthetic biology
- BS, Biology, Pennsylvania State University
- PhD, Genetics, Case Western Reserve University
- MA, Bioethics, Case Western Reserve University
Morain SR, Weinfurt K, Bollinger J, Geller G, Mathews DJH, Sugarman J. Ethics and Collateral Findings in Pragmatic Clinical Trials. Am J Bioeth. 2020 Jan;20(1):6-18. doi: 10.1080/15265161.2020.1689031. PMID: 31896322
Morain S, Mathews D, Murphy Bollinger J, Sugarman J. Response to Open Peer Commentaries on “Ethics and Collateral Findings in Pragmatic Clinical Trials”. Am J Bioeth. 2020 Jan;20(1):W9-W11. doi: 10.1080/15265161.2019.1699615. PMID: 31896323
Rieder TN, Hutler B, Mathews DJH. Artificial Intelligence in Service of Human Needs: Pragmatic First Steps Toward an Ethics for Semi-Autonomous Agents. AJOB Neurosci. 2020 Apr-Jun;11(2):120-127. doi: 10.1080/21507740.2020.1740354. PMID: 32228385.
Stuttgen K, Bollinger J, McCague A, Dvoskin R, Mathews D. Family Communication Patterns and Challenges of Huntington’s Disease Risk, the Decision to Pursue Presymptomatic Testing, and Test Results [published online ahead of print, 2020 Jun 15]. J Huntingtons Dis. 2020;10.3233/JHD-200402. doi:10.3233/JHD-200402
Stuttgen K, McCague A, Bollinger J, Dvoskin R, Mathews D. Whether, when, and how to communicate genetic risk to minors: ‘I wanted more information but I think they were scared I couldn’t handle it’ [published online ahead of print, 2020 Jul 23]. J Genet Couns. 2020;10.1002/jgc4.1314. doi:10.1002/jgc4.1314.
Morain SR, Mathews DJH, Weinfurt K, May E, Bollinger JM, Geller G, Sugarman J. Stakeholder Perspectives Regarding Pragmatic Clinical Trial Collateral Findings. Learn Health Syst. 2020;e10245. doi:10.1002/lrh2.10245.
Bollinger, J, Geller G, Weinfurt K, May E, Morain S, Mathews DJH, Sugarman J. Patients’ Views about the Disclosure of Collateral Findings in Pragmatic Clinical Trials: A Focus Group Study. [published online ahead of print, 2020 Aug 19]. J Gen Intern Med. 2020;10.1007/s11606-020-06113-5. doi:10.1007/s11606-020-06113-5.
Berry JD, Bedlack R, Mathews D, Agnese W, Apple S. Engaging ALS patients and caregivers (the ALS research ambassadors) to help design the REFINE-ALS biomarker study. [published online ahead of print, 2020 Aug]. Amyotroph Lateral Scler Frontotemporal Degener 2020. doi:10.1080/21678421.2020.1804939.
Geller G, Duggal P, Thio CL, Mathews D, Kahn JP, Maragakis L, Garibaldi B. Genomics in the Era of COVID-19: Ethical Implications for Clinical Practice and Public Health. Genome Med 2020;12(95). doi: 10.1186/s13073-020-00792-9.
Sanghavi K, Feero WG, Mathews DJH, Prince AER, Price LL, Liu ET, Brothers KB, Roberts SJ, Lee C. Employees’ Views and Ethical, Legal, and Social Implications Assessment of Voluntary Workplace Genomic Testing. Front Genet 2021;12:370. doi: 10.3389/fgene.2021.643304.
Overby Taylor C, Manov NF, Crew KD, Weng C, Connolly J, Chute CG, Ford D, Lehmann H, Rahm AK, Kullo IJ, Caraballo PJ, Holm IA, Mathews D. Preferences for updates on general research results: A survey of participants in genomics research at two institutions. J Pers Med 2021; 11(5):399. doi: 10.3390/jpm11050399.
Lovell-Badge R, Anthony E, Barker RA, Bubela T, Brivanlou AH, Carpenter M, Charo RA, Clark A, Clayton E, Cong Y, Daley GQ, Fu J, Fujita M, Greenfield A, Goldman SA, Hill L, Hyun I, Isasi R, Kahn J, Kato K, Kim JS, Kimmelman J, Knoblich JA, Mathews D, Montserrat N, Mosher J, Munsie M, Nakauchi H, Naldini L, Naughton G, Niakan K, Ogbogu U, Pedersen R, Rivron N, Rooke H, Rossant J, Round J, Saitou M, Sipp D, Steffann J, Sugarman J, Surani A, Takahashi J, Tang F, Turner L, Zettler PJ, Zhai X. ISSCR Guidelines for Stem Cell Research and Clinical Translation: The 2021 update. Stem Cell Reports 2021;S2213-6711(21)00263-0. doi: 10.1016/j.stemcr.2021.05.012.
Clark AT, Brivanolou A, Fu J, Kato K, Mathews D, Niakan K, Rivron N, Saitou M, Surani A, Tang F, Rossant J. Human embryo research, stem cell-derived embryo models and in vitro gametogenesis: considerations leading to the revised ISSCR guidelines. Stem Cell Reports 2021; S2213-6711(21)00259-9. doi: 10.1016/j.stemcr.2021.05.008.
Walker A, Bonham VL, Boyce A, Clayton EW, Garcia D, Johnson S, Laeyendecker O, Lewis L, Margolick J, Mathews D, Parker MJ, Spicer P, Thio CL, Geller G, Kahn J. Ethical Issues in Genetics and Infectious Diseases Research: An Interdisciplinary Expert Review. Ethics, Medicine and Public Health 2021; 18:100684. doi: 10.1016/j.jemep.2021.100684.
Bollinger J, May E, Mathews D, Donowitz M, Sugarman J. Patients’ Perspectives on the Derivation and Use of Organoids. Stem Cell Reports 2021;S2213-6711(21)00329-5. doi: 10.1016/j.stemcr.2021.07.004.
Weinfurt K, Bollinger J, May E, Geller G, Mathews DJH, Morain SR, Sugarman J. Patients’ Reactions to Letters Communicating Collateral Findings of Pragmatic Clinical Trials: A National Web-Based Survey. J Gen Intern Med. 2021 Aug 12:1–7. doi: 10.1007/s11606-021-07087-8. PMID: 34383228.
Smith G, Mathews D, Sander-Effron S, Requesens D, Turan N, Scheinfeldt L. Microsatellite markers in biobanking: a new multiplexed assay. Biopreserv Biobank 2021. Sep 1. doi: 10.1089/bio.2021.0042. Epub ahead of print. PMID: 34468209.