Ethics in Precision Health

To what extent are precision approaches to health new and what are clinical and ethical implications of these approaches for distinguishing between care and research? This issue of the AMA Journal of Ethics considers consent, governance, and appropriate uses of data. We also consider ethical questions surrounding novel clinical applications, public policy questions about stewardship of huge numbers of patients’ information, and questions about how to justly distribute these efforts’ risks and benefits.

Volume 20, Number 9: E793-910 Full Issue PDF
  • From the Editor in Chief
    Sep 2018

    Illustratio

    Audiey C. Kao, MD, PhD
    The fully redesigned journal features more visual content, enhanced search capabilities, and content generated through institutional partnerships.
    AMA J Ethics. 2018;20(9):E795-797. doi: 10.1001/amajethics.2018.795.
  • From the Editor
    Sep 2018

    How Stratification Unites Ethical Issues in Precision Health

    Jason N. Batten, MA
    Precision medicine creates patient subgroups to develop targeted interventions. This raises ethical issues about privacy, informed consent, and social justice. It also raises questions about cost, what to do with faulty data, and the role of genetic stratification in treating and monitoring patients.
    AMA J Ethics. 2018;20(9):E798-803. doi: 10.1001/amajethics.2018.798.
  • Case and Commentary
    Sep 2018

    Is It Ethical to Use Prognostic Estimates from Machine Learning to Treat Psychosis?

    Nicole Martinez-Martin, JD, PhD, Laura B. Dunn, MD, and Laura Weiss Roberts, MD, MA
    Calibrating a machine learning model with data from a local setting is key to predicting psychosis outcomes. Clinicians also need to understand an algorithm’s limitations and disclose clinically and ethically relevant information to patients.
    AMA J Ethics. 2018;20(9):E804-811. doi: 10.1001/amajethics.2018.804.
  • Case and Commentary
    Sep 2018

    Should Genetic Testing for Variants Associated with Influenza Infection Be Mandatory for Health Care Employees?

    Michelle Huckaby Lewis, MD, JD
    Mandatory genetic testing of health care professionals could help structure health care organizations’ responses to a pandemic. Patients and more susceptible employees can benefit, and these benefits must be weighed against concerns about fairness, autonomy, genetic privacy, and potential loss of employment opportunities.
    AMA J Ethics. 2018;20(9):E819-825. doi: 10.1001/amajethics.2018.819.
  • State of the Art and Science
    Sep 2018

    Justice in CRISPR/Cas9 Research and Clinical Applications

    Clara C. Hildebrandt, MD and Jonathan M. Marron, MD, MPH
    Gene editing with CRISPR/Cas9 raises concerns about equitable access to therapies that could limit research participation by minority group members. These concerns can be addressed through public education, transparency, and stakeholder partnerships.
    AMA J Ethics. 2018;20(9):E826-833. doi: 10.1001/amajethics.2018.826.
  • State of the Art and Science
    Sep 2018

    What Precision Medicine Can Learn from Rare Genetic Disease Research and Translation

    Holly K. Tabor, PhD and Aaron Goldenberg, PhD, MPH
    Rare genetic disease research has something to teach precision medicine about addressing some patients’ limited access to treatment. Health disparities exacerbated by high costs and limited availability of drugs can, perhaps, be mitigated when patient activism accelerates drug development.
    AMA J Ethics. 2018;20(9):E834-840. doi: 10.1001/amajethics.2018.834.
  • State of the Art and Science
    Sep 2018

    Targeted Dosing as a Precision Health Approach to Pharmacotherapy in Children with Inflammatory Bowel Disease

    Anava A. Wren, PhD and K. T. Park, MD, MS
    Targeted dosing to treat pediatric inflammatory bowel disease is challenging because dosing guidelines are based on data gathered from adult subjects of clinical trials. Patients’ families and health care organizations also incur high costs and must try to balance potential benefits against risks of ongoing monitoring.
    AMA J Ethics. 2018;20(9):E841-848. doi: 10.1001/amajethics.2018.841.
  • Policy Forum
    Sep 2018

    Should NASA Collect Astronauts’ Genetic Information for Occupational Surveillance and Research?

    Rebekah Davis Reed, PhD, JD and Erik L. Antonsen, PhD, MD
    Though the National Aeronautics and Space Administration’s collection of disaggregated genetic data for occupational surveillance and research raises numerous privacy concerns, the Genetic Information Nondiscrimination Act of 2008 allows genetic information to be used to develop personal pharmaceuticals.
    AMA J Ethics. 2018;20(9):E849-856. doi: 10.1001/amajethics.2018.849.
  • Policy Forum
    Sep 2018

    What Should Oversight of Clinical Decision Support Systems Look Like?

    Emily L. Evans, PhD, MPH and Danielle Whicher, PhD, MHS
    Clinical decision support systems leverage data generated in the course of standard clinical care to improve clinical practice. They need to ensure privacy and quality of patients’ data, but must also allow queries of electronic health records.
    AMA J Ethics. 2018;20(9):E857-863. doi: 10.1001/amajethics.2018.857.
  • Policy Forum
    Sep 2018

    How Could Commercial Terms of Use and Privacy Policies Undermine Informed Consent in the Age of Mobile Health?

    Cynthia E. Schairer, PhD, Caryn Kseniya Rubanovich, MS, and Cinnamon S. Bloss, PhD
    Questions about data privacy need to be addressed when research institutions negotiate with companies developing mobile health applications. Commercial terms of use and data sharing notifications should be reviewed before use in human subject research settings.
    AMA J Ethics. 2018;20(9):E864-872. doi: 10.1001/amajethics.2018.864.
  • History of Medicine
    Sep 2018

    Why Does the Shift from “Personalized Medicine” to “Precision Health” and “Wellness Genomics” Matter?

    Eric T. Juengst, PhD and Michelle L. McGowan, PhD
    Transitions in relabeling personalized medicine as precision medicine, precision health, or wellness genomics reflect shifting the locus of responsibility for health from individuals to clinicians and in shifting focus from genetic risk to genetic enhancement.
    AMA J Ethics. 2018;20(9):E881-890. doi: 10.1001/amajethics.2018.881.
  • Art of Medicine
    Sep 2018

    The Precision Portrait

    Samuel Rodriguez, MD and Nick Love, PhD
    This portrait of a child against a backdrop of health data suggests how a patient’s individuality can be obscured when precision medicine is used in decision making and developing target therapies.
    AMA J Ethics. 2018;20(9):E891-893. doi: 10.1001/amajethics.2018.891.
  • Art of Medicine
    Sep 2018

    Kaleidoscope

    Audrey Gray, MD, MPH
    This photograph of a kaleidoscope of potentially life-saving and potentially life-threatening pills suggests ethical conflict inherent in clinicians’ strivings to meet patients’ pain relief needs without contributing crises of drug diversion.
    AMA J Ethics. 2018;20(9):E894-896. doi: 10.1001/amajethics.2018.894.
  • Personal Narrative
    Sep 2018

    Graphic Medicine and the Limits of Biostatistics

    Sathyaraj Venkatesan, PhD and Sweetha Saji, MA
    Graphic pathographies can illustrate how overreliance on statistics can obscure the clinical relevance of patients’ experiences of anxiety when they’re presented with prognoses.
    AMA J Ethics. 2018;20(9):E897-901. doi: 10.1001/amajethics.2018.897.
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    Podcast
    Sep 2018

    Ethics Talk: Protecting Patients and Promoting Inclusivity in Precision Health Research

    Large precision health initiatives like the National Institutes of Health’s All of Us campaign raise important ethical questions about consent, privacy, and inclusivity. This month on Ethics Talk, we explore with Dr Katie Johansen Taber and Ysabel Duron strategies for protecting participants and ensuring that diverse communities are represented.