Bioethics Publications

  • Federal "Right to Try" Bill: Wrong on the Law, and Wrong For Patients

    Lisa Kearns, Beth Roxland – Alumni

    The Hill – June 28, 2016

    On June 16, Jordan McLinn, a seven-year old boy who suffers from Duchenne muscular dystrophy, joined other patients, their advocates, and members of Congress at a rally on the Capitol lawn in support of a federal “right to try” bill. At first blush, the Trickett Wendler Right to Try Act (S. 2912) would grant McLinn and other dying patients an automatic right to pre-approval, or “compassionate,” access to experimental drugs that appear promising in early testing but that have not yet completed clinical trials and been approved by the FDA. Unfortunately, the new federal bill, like similar state laws, is both legally ineffective and ethically troubling.

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  • Ethics of Advances in Human Embryonic Stem Cell Research

    Matthew Dias – Student

    Ampersand – June 16, 2016

    For several decades, scientists have reasoned that stem cells—and human embryonic stem cells (hESC) especially—have the potential to improve human health. In particular, research indicates that the properties unique to hESC (e.g., plasticity, potency) can benefit our understanding of, and approaches to, regenerative medicine and embryology. For instance, understanding how these cells might (i) mitigate or treat diseases such as Alzheimer’s, Parkinson’s, cancer, and diabetes, and (ii) produce vital insights into human development, is a priority within the scientific research enterprise, but one whose methodologies and ethics should be thoroughly monitored and reviewed in accordance with advances in medicine.

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  • Blame After Forgiveness

    Maura Priest – Student

    – June 1, 2016

    When a wrongdoing occurs, victims, barring special circumstance, can aptly forgive their wrongdoers, receive apologies, and be paid reparations. It is also uncontroversial, in the usual circumstances, that wronged parties can aptly blame their wrongdoer. But controversy arises when we consider blame from third-parties after the victim has forgiven. At times it seems that wronged parties can make blame inapt through forgiveness. If third parties blame anyway, it often appears the victim is justified in protesting. “But I forgave him!” In other cases, however, forgiveness seems irrelevant: B can forgive A, but it can still seem that third parties can aptly blame A for the wrong against B. This perplexity adds a dimension to ongoing discussion regarding criteria for apt blame and the related issues of standing and fittingness. This paper explores the status of third party blame after forgiveness. I argue that while post forgiveness blame is often inapt, in many other cases forgiveness is irrelevant. This difference is explained by appeal to the various relationships third parties might have to wronged parties, and how these differences affect the ways we blame and thereby blame’s aptness.

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  • Ethics for Ethicists? The Professionalization of Clinical Ethics Consultation

    Rachel Yarmolinsky – Alumni

    AMA Journal of Ethics – May 5, 2016

    Professionalism and codes of ethics are intrinsically tied. As professions establish themselves, their members write codes of ethics to help define the professions and who can be a considered a professional. The codes explain why and how professions are deserving of trust, establish standards with specific guidelines for ethical practice, and designate who will have the authority to enforce standards. Do clinical ethicists need a code of ethics?

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  • In IVF, Questions About ‘Mosaic’ Embryos

    Kira Peikoff – Alumni

    The New York Times – April 18, 2016

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  • Planning for Ancillary Care Provision: Lessons From the Developing World

    Nora Jacobson – Faculty

    Journal of Empirical Research on Human Research Ethics – March 19, 2016

    As part of a study designed to assess a new strategy for increasing health research participation by members of underrepresented populations in the United States, we explored expectations about volunteering for research among people from lower income and largely minority communities in Madison, Wisconsin. Members of these communities often saw research participation as a means to access health care that might otherwise be unavailable to them. In light of persistent structural barriers to access, and the resulting health disparities, we argue that one cannot assume the existence of a “fair exchange” in which a community is likely to benefit from the results of research conducted with members of that community. We use ethical analysis and empirical research conducted in the developing world to explore how investigators in the United States might think about their obligations to provide ancillary care. 

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  • Ethical Issues in the Use of Extracorporeal Membrane Oxygenation in Controlled Donation After Circulatory Determination of Death

    Anne Dalle Ave – Student

    American Journal of Transplantation – March 3, 2016

    The use of donor extracorporeal membrane oxygenation (ECMO) to improve graft outcomes by some controlled donation after circulatory determination of death (cDCDD) programs raises ethical issues. We reviewed cDCDD protocols using ECMO and the relevant ethical literature to analyze these issues. It is not obvious if ECMO in cDCDD improves graft outcomes. In our opinion, ECMO implemented before death can interfere with end-of-life care and damage bodily integrity. By restoring systemic circulation, ECMO risks invalidating the preceding declaration of death, if brain and cardiac perfusion is not adequately excluded because of malfunction or misplacement of the supra-diaphragmatic aortic occlusion balloon. The use of ECMO is not compatible with the acronym DCDD, since circulation is restored after the determination of death. Because of these deficiencies, we conclude that other techniques are preferable such as rapid recovery or in situ cold infusion. If ECMO is performed, it requires a specific informed consent and transparency.

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  • Ethics Consultation Quality Assessment Tool: A Novel Method for Assessing the Quality of Ethics Case Consultations Based on Written Records

    Robert A. Pearlman, Mary Beth Foglia, Ellen Fox, Jennifer H. Cohen, Barbara L. Chanko, and Kenneth A. Berkowitz – Faculty

    The American Journal of Bioethics – February 25, 2016

    Although ethics consultation is offered as a clinical service in most hospitals in the United States, few valid and practical tools are available to evaluate, ensure, and improve ethics consultation quality. The quality of ethics consultation is important because poor quality ethics consultation can result in ethically inappropriate outcomes for patients, other stakeholders, or the health care system. To promote accountability for the quality of ethics consultation, we developed the Ethics Consultation Quality Assessment Tool (ECQAT). ECQAT enables raters to assess the quality of ethics consultations based on the written record. Through rigorous development and preliminary testing, we identified key elements of a quality ethics consultation (ethics question, consultation-specific information, ethical analysis, and conclusions and/or recommendations), established scoring criteria, developed training guidelines, and designed a holistic assessment process. This article describes the development of the ECQAT, the resulting product, and recommended future testing and potential uses for the tool.

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  • NPRM Public Comment Deadline Has Passed—Implications for Revisions to the Common Rule and the Future of Human Subjects Protections

    Matthew Dias – Student

    Ampersand – February 8, 2016

    The January 6, 2016 closure of the public comment period for revisions to the Common Rule concluded several contentious months in the bioethics world.

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  • Restricting Choices of Childbearing Women

    Bela Fishebyn – Alumni

    The American Journal of Bioethics – February 1, 2016

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