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Pilar N. Ossorio [9]Pilar Ossorio [5]
  1.  34
    Ethical Responsibilities for Companies That Process Personal Data.Matthew S. McCoy, Anita L. Allen, Katharina Kopp, Michelle M. Mello, D. J. Patil, Pilar Ossorio, Steven Joffe & Ezekiel J. Emanuel - 2023 - American Journal of Bioethics 23 (11):11-23.
    It has become increasingly difficult for individuals to exercise meaningful control over the personal data they disclose to companies or to understand and track the ways in which that data is exchanged and used. These developments have led to an emerging consensus that existing privacy and data protection laws offer individuals insufficient protections against harms stemming from current data practices. However, an effective and ethically justified way forward remains elusive. To inform policy in this area, we propose the Ethical Data (...)
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  2.  23
    How Can Law and Policy Advance Quality in Genomic Analysis and Interpretation for Clinical Care?Barbara J. Evans, Gail Javitt, Ralph Hall, Megan Robertson, Pilar Ossorio, Susan M. Wolf, Thomas Morgan & Ellen Wright Clayton - 2020 - Journal of Law, Medicine and Ethics 48 (1):44-68.
    Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.
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  3. Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.Susan M. Wolf, Pilar N. Ossorio, Susan A. Berry, Henry T. Greely, Amy L. McGuire, Michelle A. Penny & Sharon F. Terry - 2020 - Journal of Law, Medicine and Ethics 48 (1):69-86.
    Human genomics is a translational field spanning research, clinical care, public health, and direct-to-consumer testing. However, law differs across these domains on issues including liability, consent, promoting quality of analysis and interpretation, and safeguarding privacy. Genomic activities crossing domains can thus encounter confusion and conflicts among these approaches. This paper suggests how to resolve these conflicts while protecting the rights and interests of individuals sequenced. Translational genomics requires this more translational approach to law.
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  4.  41
    Letting the Gene out of the bottle: A comment on returning individual research results to participants.Pilar N. Ossorio - 2006 - American Journal of Bioethics 6 (6):24 – 25.
  5.  17
    FMT and Microbial Medical Products: Generating High-Quality Evidence through Good Governance.Pilar N. Ossorio & Yao Zhou - 2019 - Journal of Law, Medicine and Ethics 47 (4):505-523.
    This article argues that current data for the safety and efficacy of fecal microbiota transplants as a treatment for any indication, including recurrent Clostridioides difficile infection, is low-quality. It develops a governance proposal that encourages production of high-quality evidence by incentivizing well-designed RCTs of stool and stoolderived microbial products. The proposal would require that FDA change its current enforcement approach, but it would not require any change in statutes or regulations.
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  6.  33
    The Human Genome as Common Heritage: Common Sense or Legal Nonsense?Pilar N. Ossorio - 2007 - Journal of Law, Medicine and Ethics 35 (3):425-439.
    In the opening years of the 21st century, it became fashionable to describe the human genome as belonging to the common heritage of humanity. The United Nations, in its Universal Declaration on the Human Genome and Human Rights, now identifies the human genome as part of the common heritage, as does the international Human Genome Organization and the Council of Europe. The common heritage concept has played a prominent role in arguments against patenting the human genome or portions thereof. This (...)
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  7.  32
    About Face: Forensic Genetic Testing for Race and Visible Traits.Pilar N. Ossorio - 2006 - Journal of Law, Medicine and Ethics 34 (2):277-292.
    Information from forensic genetic tests of crime scene samples has been used to make claims about suspects' race and appearance. This article discusses and critiques the techniques used to make such claims, and raises policy concerns about them.
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  8.  22
    Fairness in Manufacturing Cellular Therapies.Amritava Das, Krishanu Saha & Pilar N. Ossorio - 2018 - American Journal of Bioethics 18 (4):68-70.
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  9. (1 other version)Bodies of data: genomic data and bioscience data sharing.Pilar N. Ossorio - 2011 - Social Research: An International Quarterly 78 (3):907-932.
    The biosciences have become information sciences, in which knowledge is often produced in silica, by the manipulation and analysis of large datasets. Genomics has been at the forefront of the data explosion and is a model for bioscience as a large-scale endeavor. Large genome research datasets are frequently shared through research repositories. To protect the interests of people from whom the data were derived , human data are often shared through a controlled access mechanism, in which data repositories can, in (...)
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  10.  18
    The Ethics of Translating High‐Throughput Science into Clinical Practice.Pilar N. Ossorio - 2014 - Hastings Center Report 44 (5):8-9.
    Biomedical research is increasingly data intensive and computational, and “big data science” is migrating into the clinical arena. Unfortunately, ethicists, regulators, and policy‐makers have barely begun to explore the ethical, legal, and social issues raised by the variety of analytical and computational approaches in use and under development in biology and medicine. Most scholarship concerning big data bioscience has focused on privacy, a vitally important consideration but not the only one. Among the issues raised by new computational technologies are questions (...)
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  11.  30
    Genotype-Driven Recruitment Without Deception.Pilar Ossorio & Marsha Mailick - 2017 - American Journal of Bioethics 17 (4):60-61.
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  12.  4
    Legal and Ethical Issues in Biotechnology.Pilar Ossorio - 2002 - In Justine Burley & John Harris (eds.), A Companion to Genethics. Wiley-Blackwell. pp. 408–419.
    The prelims comprise: Introduction Background on Patent Law: Fighting the Myths and Misconceptions The Ethics of Patenting Human Genes.
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  13.  39
    Not Taking, Just Borrowing: Government Use of Patented Drugs.Pilar N. Ossorio - 2002 - American Journal of Bioethics 2 (3):51-52.