Debra JH Mathews, Ph.D., M.A.
Assistant Director for Science Programs, Berman Bioethics Institute
1809 Ashland Avenue, 208. Baltimore MD 21205
Science is done in the context of a particular social, policy and legal environment, and in the United States, frequently with the help of taxpayers’ money. My work focuses on the intersection of science and the society in which it takes place: how communication does and doesn’t happen, how regulation and oversight does and doesn’t happen, and why; and, importantly, how to improve those interactions. My major areas of focus are genetics, stem cell research and neuroscience.
One current project in genetics entails a systematic analysis of the impact on federal policy of the Ethical, Legal and Social Implications Program of the National Human Genome Research Institute (NHGRI). This program was established at the beginning of the Human Genome Project to conduct and fund research and education related to the implications of human genetics and genomics research. One of the expressed goals of the program has been to inform policy. My project is the first to attempt an empirical analysis of whether this goal has been achieved.
A current project of the Stem Cell Policy and Ethics program (SCoPE), and in particular, the Hinxton Group, looks at issues of intellectual property and data and materials sharing in stem cell science, in light of broader considerations of global health and justice – the idea being that there should be ways to promote both scientific innovation and the public good. Additional information on this project can be found here.
Finally, in the area of neuroscience, the Program in Ethics and Brain Science (PEBS) has a collaborative project underway on the implications of advances in neuroscience for philosophical and lay notions of free will and moral responsibility. Another project underway relates to new technologies such as deep brain stimulations (DBS) and how these technologies impact notions of personal identity from the perspectives of patients, families and researchers. This project was inspired by a story from a neurosurgeon about a patient of his who underwent DBS to treat Parkinsonian tremor. The man had been a curmudgeon his whole life, and married for decades. Following DBS, he was changed: rather than congenitally dour, he saw the world through rose-colored glasses. If you turned off the stimulation, he was his curmudgeonly self; turn on the stimulation and he was uniformly optimistic. In addition, he was driving his wife nuts. How are patients, families, physicians and society to deal with changes of this sort? How do patients feel about them, rare though they may be? How do their families view such changes? And how do we address the potential for such changes in the context of research and clinical care?
Mathews DJH. (2011) Deep brain stimulation, personal identity and policy. International Review of Psychiatry. 23(5): 486-92.
Regenberg A, Mathews DJ. (2011) Promoting justice in stem cell intellectual property. Regen Med. 6(6 Suppl): 79-84.
Mathews DJH, Graff GD, Saha K, Winickoff D. (2011) Access To Stem Cells And Data: Persons, Property Rights, And Scientific Progress. Science. 331(6018): 725-7.
Rabins PV, Appleby BS, Brandt J, DeLong MR, Dunn LB, Gabriëls L, Greenberg BD, Haber SN, Holtzheimer III PE, Mari Z, Mayberg HS, McCann E, Mink SP, Rasmussen S, Schlaepfer TE, Vawter DE, Vitek JL, Walkup J, Mathews DJH. (2009) Scientific and Ethical Issues Related to Deep Brain Stimulation for Disorders of Mood, Behavior and Thought. Arch Gen Psychiatry. 66(9): 931-7.
Mathews DJH, Donovan P, Harris J, Lovell-Badge R, Savulescu J, Faden R. (2009) Pluripotent Stem Cell-Derived Gametes: Truth and (Potential) Consequences. Cell Stem Cell. 5: 11-14.
Regenberg A, Hutchinson L, Schanker B, Mathews DJH. (2009) Medicine on the Fringe: Cell-based interventions in advance of evidence. Stem Cells. 27(9): 2312-9. Epub 21 May 2009.
Duggan PS, Siegel AW, Bok H, Blass DM, Coyle JT, Faden R, Finkel J, Gearhart JD, Greely HT, Hillis A, Hoke A, Johnson R, Johnston M, Kahn J, Kerr D, Kurtzberg J, Liao SM, McDonald JW, McKhann G, Nelson KB, Rao M, Regenberg A, Smith K, Solter D, Song H, Vescovi A, Young W, Mathews DJH. (2009) Unintended Changes in Cognition, Mood, and Behavior Arising from Cell-Based Interventions for Neurological Conditions: Ethical Challenges. Am J Bioethics. 9(5): 31-6.
Regenberg A, Mathews DJH, Bok H, Blass DM, Coyle JT, Duggan PS, Finkel J, Greely HT, Hillis A, Hoke A, Johnson R, Johnston M, Kahn J, Kerr D, Kurtzberg J, Liao SM, McDonald JW, McKhann G, Nelson KB, Rao M, Siegel AW, Smith K, Solter D, Song H, Sugarman J, Vescovi A, Young W, Gearhart JD, Faden R. (2009) The Role of Animal Models in Evaluating Reasonable Safety and Efficacy for Human Trials of Cell-Based Interventions for Neurological Conditions. J Cereb Blood Flow Metab. 29(1): 1-9. Epub 27 Aug 2008.
Mathews DJH, Sugarman J, Bok H, Blass DM, Coyle JT, Duggan PS, Finkel J, Greely HT, Hillis A, Hoke A, Johnson R, Johnston M, Kahn J, Kerr D, Kurtzberg J, Liao SM, McDonald JW, McKhann G, Nelson KB, Rao M, Regenberg A, Siegel AW, Smith K, Solter D, Song H, Vescovi A, Young W, Gearhart JD, Faden R. (2008) Cell-based Interventions for Neurological Conditions: Ethical Challenges For Early Human Trials. Neurology 71(4): 288-93. Epub 7 May 2008.
Mathews DJH, Donovan P, Harris J, Lovell-Badge R, Savulescu J, Faden R. (2006) Integrity in International Stem Cell Research Collaborations. Science 313: 921-922.
Mathews DJH, Kalfoglou A, Hudson K. (2005) Geneticists’ Views On Science Policy Formation and Public Outreach. American Journal of Medical Genetics 137(2): 161-9.
Kalfoglou AL, Doksum T, Bernhardt B, Geller G, LeRoy L, Mathews DJH, Evans J, Doukas D, Reame N, Scott J, and Hudson K. (2005) Opinions about New Reproductive Genetic Technologies: Hopes and Fears for Our Genetic Future. Fertility and Sterility 83(6): 1612-21 (in press).
Mathews DJ (2002). Encouraging Everyday Lab Ethics. The Scientist 16(14): 58.
Cutler DJ, Zwick ME, Carrasquillo MM, Yohn CT, Tobin KP, Kashuk C, Mathews DJ, Shah NA, Eichler EE, Warrington JA, Chakravarti A (2001). High-throughput Variation Detection and Genotyping Using Microarrays. Genome Research 11(11): 1913-25.
Mathews DJ, Kashuk C, Brightwell G, Eichler EE, Chakravarti A (2001). Sequence Variation Within the Fragile X Locus. Genome Research 11(8): 1382-91.