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Mary A. Majumder [21]Mary Anderlik Majumder [9]Mary Majumder [1]
  1.  27
    What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
    A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
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  2.  38
    Introduction: Sharing Data in a Medical Information Commons.Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):12-20.
    Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
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  3.  17
    Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.
    Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.
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  4.  11
    The Role of Participants in a Medical Information Commons.Mary A. Majumder, Juli M. Bollinger, Angela G. Villanueva, Patricia A. Deverka & Barbara A. Koenig - 2019 - Journal of Law, Medicine and Ethics 47 (1):51-61.
    Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.
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  5.  11
    Neuroethics at 15: Keep the Kant but Add More Bacon.Gabriel Lázaro-Muñoz, Peter Zuk, Stacey Pereira, Kristin Kostick, Laura Torgerson, Demetrio Sierra-Mercado, Mary Majumder, J. Blumenthal-Barby, Eric A. Storch, Wayne K. Goodman & Amy L. McGuire - 2019 - American Journal of Bioethics Neuroscience 10 (3):97-100.
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  6.  9
    Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
    Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
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  7.  24
    Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.Patricia A. Deverka, Dierdre Gilmore, Jennifer Richmond, Zachary Smith, Rikki Mangrum, Barbara A. Koenig, Robert Cook-Deegan, Angela G. Villanueva, Mary A. Majumder & Amy L. McGuire - 2019 - Journal of Law, Medicine and Ethics 47 (1):70-87.
    A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.
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  8.  56
    An Embedded Model for Ethics Consultation: Characteristics, Outcomes, and Challenges.Courtenay R. Bruce, Adam Peña, Betsy B. Kusin, Nathan G. Allen, Martin L. Smith & Mary A. Majumder - 2014 - Ajob Empirical Bioethics 5 (3):8-18.
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  9.  1
    Donors, Authors, and Owners: How is Genomic Citizen Science Addressing Interests in Research Outputs?Christi J. Guerrini, Meaganne Lewellyn, Mary A. Majumder, Meredith Trejo, Isabel Canfield & Amy L. McGuire - 2019 - BMC Medical Ethics 20 (1):1-13.
    Background Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger—and also more likely to conflict with those of institution-based researchers and other stakeholders—as (...)
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  10. Future Directions for Oversight of Stem Cell Research in the United States: An Update.Cynthia B. Cohen & Mary A. Majumder - 2009 - Kennedy Institute of Ethics Journal 19 (2):195-200.
  11.  35
    “Systematizing” Ethics Consultation Services.Courtenay R. Bruce, Margot M. Eves, Nathan G. Allen, Martin L. Smith, Adam M. Peña, John R. Cheney & Mary A. Majumder - 2015 - HEC Forum 27 (1):35-45.
    While valuable work has been done addressing clinical ethics within established healthcare systems, we anticipate that the projected growth in acquisitions of community hospitals and facilities by large tertiary hospitals will impact the field of clinical ethics and the day-to-day responsibilities of clinical ethicists in ways that have yet to be explored. Toward the goal of providing clinical ethicists guidance on a range of issues that they may encounter in the systematization process, we discuss key considerations and potential challenges in (...)
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  12.  28
    Future Directions for Oversight of Stem Cell Research in the United States.Cynthia B. Cohen & Mary A. Majumder - 2009 - Kennedy Institute of Ethics Journal 19 (1):79-103.
  13.  3
    Data Sharing in the Context of Health-Related Citizen Science.Mary A. Majumder & Amy L. McGuire - 2020 - Journal of Law, Medicine and Ethics 48 (S1):167-177.
    As citizen science expands, questions arise regarding the applicability of norms and policies created in the context of conventional science. This article focuses on data sharing in the conduct of health-related citizen science, asking whether citizen scientists have obligations to share data and publish findings on par with the obligations of professional scientists. We conclude that there are good reasons for supporting citizen scientists in sharing data and publishing findings, and we applaud recent efforts to facilitate data sharing. At the (...)
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  14.  26
    The “Permanent” Patient Problem.Courtenay R. Bruce & Mary A. Majumder - 2014 - Journal of Law, Medicine and Ethics 42 (1):88-92.
    Patients who enter the health care system for acute care may become “permanent” patients of the hospital when a lack of resources precludes discharge to the next level of post-acute care. Legal, professional, and ethical norms prohibit physician and acute care hospital “dumping” of these patients. However, limitless use of hospital resources for indefinite stays is untenable. In the absence of hospital policy addressing this specific issue, the availability of financial support will be determined by health care professionals' willingness to (...)
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  15.  17
    The “Permanent” Patient Problem.Courtenay R. Bruce & Mary A. Majumder - 2014 - Journal of Law, Medicine and Ethics 42 (1):88-92.
    Patients who enter the health care system for acute care may become “permanent” patients of the hospital when a lack of resources precludes discharge to the next level of post-acute care. The care of these patients contributes to the rising costs of health care and will remain largely unaffected by the Affordable Care Act. For example, some resources may be available for treatment of undocumented persons, but Medicaid enrollment is unavailable for this population. Even where patients have access to Medicaid, (...)
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  16.  22
    The Ethical Health Lawyer.Amy L. McGuire, Mary A. Majumder & J. Richard Cheney - 2005 - Journal of Law, Medicine and Ethics 33 (3):603-607.
  17.  19
    Cyberbanks and Other Virtual Research Repositories.Mary Anderlik Majumder - 2005 - Journal of Law, Medicine and Ethics 33 (1):31-39.
    Few things seem more a part of the material world than biological specimens. Yet the processes by which collections of specimens are assembled, translated into information, combined with more information, and distributed are taking research repositories into the virtual realm.The term “virtual” has a number of meanings, and so a research repository can qualify as virtual in a variety of ways. The term would seem to apply, for example, to constructing a repository by forming a network among institutions; using the (...)
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  18.  19
    The Ethical Health Lawyer.Amy L. McGuire, Mary A. Majumder & J. Richard Cheney - 2005 - Journal of Law, Medicine and Ethics 33 (3):603-607.
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  19.  13
    Cyberbanks and Other Virtual Research Repositories.Mary Anderlik Majumder - 2005 - Journal of Law, Medicine and Ethics 33 (1):31-39.
    Few things seem more a part of the material world than biological specimens. Yet the processes by which collections of specimens are assembled, translated into information, combined with more information, and distributed are taking research repositories into the virtual realm.The term “virtual” has a number of meanings, and so a research repository can qualify as virtual in a variety of ways. The term would seem to apply, for example, to constructing a repository by forming a network among institutions; using the (...)
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  20.  7
    The Roles of Ethicists in Managed Care Litigation.Mary Anderlik Majumder - 2005 - Journal of Law, Medicine and Ethics 33 (2):264-273.
    In the lead article in this symposium issue, Edward Imwinkelried follows other scholars in distinguishing among three types of tasks for ethicists serving as expert witnesses: descriptive ; metaethical ; and normative. He finds agreement that the admissibility of descriptive or metaethical evidence rests upon the usual criteria of helpfulness and reliability. He breaks new ground in arguing that normative evidence typically relates to the judge's legislative rather than adjudicative function and therefore need not satisfy the usual standards for admissibility (...)
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  21.  8
    The Roles of Ethicists in Managed Care Litigation.Mary Anderlik Majumder - 2005 - Journal of Law, Medicine and Ethics 33 (2):264-273.
    In the lead article in this symposium issue, Edward Imwinkelried follows other scholars in distinguishing among three types of tasks for ethicists serving as expert witnesses: descriptive ; metaethical ; and normative. He finds agreement that the admissibility of descriptive or metaethical evidence rests upon the usual criteria of helpfulness and reliability. He breaks new ground in arguing that normative evidence typically relates to the judge's legislative rather than adjudicative function and therefore need not satisfy the usual standards for admissibility (...)
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  22.  16
    Supplementing the Fairness Framework: System-Level and Implementation Concerns.Mary Anderlik Majumder - 2004 - American Journal of Bioethics 4 (3):112-114.
  23.  26
    Bad Words.Courtenay R. Bruce, Martin L. Smith, Adam M. Peña & Mary A. Majumder - 2014 - Hastings Center Report 44 (2):13-14.
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  24.  6
    National Institutes of Mental Health Data Archive: Privacy, Consent, and Diversity Considerations and Options for Improvement.Scott M. Lee & Mary A. Majumder - forthcoming - American Journal of Bioethics Neuroscience:1-7.
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  25.  8
    Lawyers, Doctors, and the Future of Health CareStrangers in the Night: Law and Medicine in the Managed Care Era. [REVIEW]Mary Anderlik Majumder & Peter D. Jacobson - 2004 - Hastings Center Report 34 (1):42.
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  26.  17
    More Mud, Less Crystal? Ambivalence, Disability, and PGD.Mary Anderlik Majumder - 2012 - American Journal of Bioethics 12 (4):26-28.
    The American Journal of Bioethics, Volume 12, Issue 4, Page 26-28, April 2012.
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  27.  14
    Off-Target Effects of a Defense of Denial.Mary Anderlik Majumder & Christopher Thomas Scott - 2018 - American Journal of Bioethics 18 (9):22-24.
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  28.  17
    Ethical and Legal Challenges Associated with Public Molecular Autopsies.Quianta L. Moore, Mary A. Majumder, Lindsey K. Rutherford & Amy L. McGuire - 2016 - Journal of Law, Medicine and Ethics 44 (2):309-318.
    There is a national movement supporting the retention and use of bio-specimens from deceased individuals for the purpose of genetic testing. This manuscript discusses the significance of postmortem genetic testing in the context of death determination by medical examiners. We highlight distinctive concerns that are raised in the areas of consent, confidentiality, and return of results when genetic testing is performed as part of a public molecular autopsy. We believe our manuscript will contribute to the development of a robust ethical (...)
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  29.  4
    Learning Health System — Moving From Ethical Frameworks to Practical Implementation.Stephanie R. Morain, Mary A. Majumder & Amy L. McGuire - 2019 - Journal of Law, Medicine and Ethics 47 (3):454-458.
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  30.  7
    Disability and Contingency Care.Ryan H. Nelson, Bharath Ram & Mary Anderlik Majumder - 2020 - American Journal of Bioethics 20 (7):190-192.
    Volume 20, Issue 7, July 2020, Page 190-192.
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  31.  6
    Same Goal, Different Path.Adam Peña, Courtenay R. Bruce & Mary A. Majumder - 2014 - American Journal of Bioethics 14 (1):23-24.