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Debra Juanita Hale Mathews, M.A., Ph.D.

Assistant Director for Science Programs, Berman Institute of Bioethics
Associate Professor of Genetic Medicine

Research Interests

Intersection of science, public policy, and society ...read more

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Background

Debra JH Mathews, Ph.D., M.A., 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 School of Medicine.

Dr. Mathews earned her Ph.D. 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. 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’s academic work focuses on ethics and policy issues raised by emerging technologies, with a particular focus on genetics, stem cell science, neuroscience, synthetic biology, and artificial intelligence.

Titles

Assistant Director for Science Programs, Berman Institute of Bioethics
Ethics & Governance Lead, Institute for Assured Autonomy
Associate Professor of Genetic Medicine
Associate Professor of Pediatrics

Departments / Divisions

Genetic Medicine
Pediatrics

Centers & Institutes

Berman Institute for Bioethics

Education

Degrees

M.A.; Case Western Reserve University (Ohio) (2000)
Ph.D.; Case Western Reserve University (Ohio) (2002)
B.S.; Pennsylvania State University (Pennsylvania) (1997)

Additional Training

Fellowships

Johns Hopkins University School of Medicine
Genetics
Baltimore, MD

Greenwall Fellowship
Johns Hopkins University and Georgetown University
2004
Bioethics and Health Policy
Baltimore, MD

Research & Publications

Research Summary

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.

Selected Publications

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-

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.

Contact for Research Inquiries

1809 Ashland Avenue
Room 211
Baltimore, MD 21205 map
Phone: 410-614-5581

Email me

Academic Affiliations & Courses

Courses and Syllabi

Advanced Topics in Human Genetics
Johns Hopkins University
Ethical, Legal and Social Issues in Genetics and Genomics Over Time
Johns Hopkins University
Ethics, Policy, and Emerging Biomedical Technologies
Johns Hopkins University
Practical Ethics for Future Leaders
Johns Hopkins University
TIME Genomic Medicine: Ethics Aspects of Next-Generation Sequencing
Johns Hopkins University
Ethics and Policy Issues in Next Gen Sequencing
Johns Hopkins University
Genetic Epidemiology Seminar: Human Genome Editing, Ethics & Policy
Johns Hopkins University
COVID-19, Genomics, Ethics & Policy
Johns Hopkins University
Genetic Epidemiology Seminar: Host Genomics: Ethics & Policy
Johns Hopkins University

Activities & Honors

Honors

Assistant Secretary for Health’s Award for Outstanding Team Performance, Office of the Assistant Secretary for Health, US Department of Health and Human Services
Greenwall Faculty Scholars Award - Competitive faculty development award, The Greenwall Foundation
Appointment to the Maryland Stem Cell Research Commission, Maryland Stem Cell Research Commission, Johns Hopkins University
International Neuroethics Society Nominating Committee, International Neuroethics Society
International Neuroethics Society Board of Directors
2015 class of the Leadership Program for Women Faculty, Office of Women in Science and Medicine, Johns Hopkins University
Elected Vice Chair, Maryland Stem Cell Research Commission
Greenwall Leadership Program, The Greenwall Foundation
Elected Chair, Maryland Stem Cell Research Commission
Elected Fellow, Hastings Center

Memberships

American Society for Bioethics and Humanities
American Association for the Advancement of Science
American Society of Human Genetics
Association for Practical and Professional Ethics
International Society for Stem Cell Research
International Neuroethics Society

Professional Activities

Member/Chair, Maryland Stem Cell Research Commission, 2012
Member, Policy Review Committee, Stem Cell Network, 2017
Member, NIDDK RADIANT Observational Safety and Monitoring Board (OSMB), 2019
Member, Advisory Committee, National Multiple Sclerosis Society Tissue Bank, 2019
Member, Ethics, Legal, and Social Issues sub-committee, Earth BioGenome Project Working Group, 2020
Member, ohns Hopkins/National Human Genome Research Institute Genetic Counseling Training Program Working Group (Advisory Board), 2020
Member, Johns Hopkins University School of Medicine Biospecimen Transfer Committee, 2020

Videos & Media

Lectures and Presentations

Gene Editing For Advanced Therapies: Governance, Policy, And Society
Invited Speaker/Participant, OECD Expert Meeting, Berlin, Germany (07/01/2017)
The Role of the Public in Shaping Research
Plenary Speaker, 7th International Yeast 2.0 and Synthetic Genomes Conference, Sydney, Australia (11/01/2018)
Management of Incidental Findings (IFs) in Pragmatic Clinical Trials (PCTs): Stakeholder Interviews
Speaker, 2019 Advancing Ethical Research Conference, Boston, MA (11/01/2019)
Public Responsibility in Medicine and Research (PRIM&R)
CRISPR and the meaning of solidarity in a Balkanized world
Speaker, Life 2.0: The Promise and Challenge of a CRISPR Path to a Sustainable Planet, Colloquia, Irvine, CA (12/01/2019)
National Academy of Sciences
Board on Life Sciences Fall Meeting
Panelist, Virtual (10/01/2020)
National Academies of Sciences, Engineering, and Medicine (NASEM)
The Many Faces of Trust During the Pandemic
Speaker, Ethics for Lunch Lecture Series, Baltimore, MD (02/01/2021)
Johns Hopkins University

Patient Ratings & Comments

The Patient Rating score is an average of all responses to physician related questions on the national CG-CAHPS Medical Practice patient experience survey through Press Ganey. Responses are measured on a scale of 1 to 5, with 5 being the best score. Comments are also gathered from our CG-CAHPS Medical Practice Survey through Press Ganey and displayed in their entirety. Patients are de-identified for confidentiality and patient privacy.

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