Chapel Hill, North Carolina, United States of America
  •  3
    We agree with Alfandre and colleagues that ethics guidance for contingency conditions in public health emergencies is urgently needed. The Minnesota COVID Ethics Collabora...
  •  1
    Sanity and the Metaphysics of Responsibility
    In Gary Watson (ed.), Free Will, Oxford University Press. 2003.
  •  25
    What Has Covid-19 Exposed in Bioethics? Four Myths
    Hastings Center Report 51 (3): 3-4. 2021.
  •  9
    Volume 20, Issue 8, August 2020, Page 41-43.
  •  50
    Ethical Challenges Arising in the COVID-19 Pandemic: An Overview from the Association of Bioethics Program Directors (ABPD) Task Force
    with Amy L. McGuire, Mark P. Aulisio, F. Daniel Davis, Cheryl Erwin, Thomas D. Harter, Reshma Jagsi, Robert Klitzman, Robert Macauley, Eric Racine, Matthew Wynia, and Paul Root Wolpe
    American Journal of Bioethics 20 (7): 15-27. 2020.
    The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing p...
  •  6
    Introduction: The Crucial Role of Law in Supporting Successful Translation of Genomics into Clinical Care
    with Ellen Wright Clayton and Frances Lawrenz
    Journal of Law, Medicine and Ethics 48 (1): 7-10. 2020.
  •  6
    Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential Solutions
    with Fook Yee Cheung, Lauren Clatch, Ellen Wright Clayton, and Frances Lawrenz
    Journal of Law, Medicine and Ethics 48 (1): 87-104. 2020.
    The law applicable to genomics in the United States is currently in transition and under debate. The rapid evolution of the science, burgeoning clinical research, and growing clinical application pose serious challenges for federal and state law. Although there has been some empirical work in this area, this is the first paper to survey and interview key scientific and legal stakeholders in the field of genomics to help ground identification of the most important legal problems that must be solv…Read more
  •  3
    Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics
    with Pilar N. Ossorio, Susan A. Berry, Henry T. Greely, Amy L. McGuire, Michelle A. Penny, and Sharon F. Terry
    Journal of Law, Medicine and Ethics 48 (1): 69-86. 2020.
    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.…Read more
  •  4
    From Genetics to Genomics: Facing the Liability Implications in Clinical Care
    with Gary Marchant, Mark Barnes, James P. Evans, and Bonnie LeRoy
    Journal of Law, Medicine and Ethics 48 (1): 11-43. 2020.
    Health care is transitioning from genetics to genomics, in which single-gene testing for diagnosis is being replaced by multi-gene panels, genome-wide sequencing, and other multi-genic tests for disease diagnosis, prediction, prognosis, and treatment. This health care transition is spurring a new set of increased or novel liability risks for health care providers and test laboratories. This article describes this transition in both medical care and liability, and addresses 11 areas of potential …Read more
  •  5
    How Can Law and Policy Advance Quality in Genomic Analysis and Interpretation for Clinical Care?
    with Barbara J. Evans, Gail Javitt, Ralph Hall, Megan Robertson, Pilar Ossorio, Thomas Morgan, and Ellen Wright Clayton
    Journal of Law, Medicine and Ethics 48 (1): 44-68. 2020.
    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 …Read more
  •  7
    Return of Results in Participant-Driven Research: Learning from Transformative Research Models
    Journal of Law, Medicine and Ethics 48 (S1): 159-166. 2020.
    Participant-driven research is a burgeoning domain of research innovation, often facilitated by mobile technologies. Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovat…Read more
  •  17
    Moral Saints
    In Roger Crisp & Michael Slote (eds.), Virtue Ethics, Oxford University Press. 1982.
  •  11
    Meaning in Life and Why It Matters
    Princeton University Press. 2010.
    Most people, including philosophers, tend to classify human motives as falling into one of two categories: the egoistic or the altruistic, the self-interested or the moral. According to Susan Wolf, however, much of what motivates us does not comfortably fit into this scheme. Often we act neither for our own sake nor out of duty or an impersonal concern for the world. Rather, we act out of love for objects that we rightly perceive as worthy of love--and it is these actions that give meaning to ou…Read more
  •  14
    Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences
    with Deborah R. Gordon, Carmen Radecki Breitkopf, Marguerite Robinson, Wesley O. Petersen, Jason S. Egginton, Kari G. Chaffee, Gloria M. Petersen, and Barbara A. Koenig
    AJOB Empirical Bioethics 10 (1): 1-22. 2019.
  •  14
    Interview by Simon Cushing
    Journal of Cognition and Neuroethics (Philosophical Profiles). 2016.
    Simon Cushing conducted the following interview with Susan Wolf on 29 July 2016.
  •  16
    Describing economic agent-based models – Dahlem ABM documentation guidelines
    with Jean-Philippe Bouchaud, Federico Cecconi, Silvano Cincotti, Herbert Dawid, Herbert Gintis, Sander van der Hoog, Carlo C. Jaegera, Dmitry V. Kovalevsky, Antoine Mandel, and Leonidas Paroussos
    Complexity Economics 2 (1): 63-74. 2013.
  •  24
    Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants
    with Emily Scholtes, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness, and Benjamin S. Wilfond
    Journal of Law, Medicine and Ethics 46 (1): 87-109. 2018.
    Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and gui…Read more
  •  8
    The Past, Present, and Future of Informed Consent in Research and Translational Medicine
    with Ellen Wright Clayton and Frances Lawrenz
    Journal of Law, Medicine and Ethics 46 (1): 7-11. 2018.
  •  24
    The Challenge of Incidental Findings
    Journal of Law, Medicine and Ethics 36 (2): 216-218. 2008.
  •  7
    Developing ethical standards for clinical use of large-scale genome and exome sequencing has proven challenging, in part due to the inevitability of incidental or secondary findings. Policy of the American College of Medical Genetics and Genomics has evolved but remains problematic. In 2013, ACMG issued policy recommending mandatory analysis of 56 extra genes whenever sequencing was ordered for any indication, in order to ascertain positive findings in pathogenic and actionable genes. Widespread…Read more
  •  2
    Short-term favorable weather conditions are an important control of interannual variability in carbon and water fluxes
    with J. Zscheischler, S. Fatichi, P. D. Blanken, G. Bohrer, K. Clark, A. R. Desai, D. Hollinger, T. Keenan, K. A. Novick, and S. I. Seneviratne
  •  3
    Safety and benefit of discontinuing statin therapy in the setting of advanced, life-limiting illness a randomized clinical trial
    with J. S. Kutner, P. J. Blatchford, D. H. Taylor, C. S. Ritchie, J. H. Bull, D. L. Fairclough, L. C. Hanson, T. W. LeBlanc, G. P. Samsa, N. M. Aziz, D. C. Currow, B. Ferrell, N. Wagner-Johnston, S. Y. Zafar, J. F. Cleary, S. Dev, P. S. Goode, A. H. Kamal, C. Kassner, E. A. Kvale, J. G. McCallum, A. B. Ogunseitan, S. Z. Pantilat, R. K. Portenoy, Prince-Paul M., J. A. Sloan, K. M. Swetz, C. F. Von Gunten, and A. P. Abernethy
    © Copyright 2015 American Medical Association. All rights reserved.IMPORTANCE For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setti…Read more
  •  112
    Happiness and meaning: Two aspects of the good life
    Social Philosophy and Policy 14 (1): 207-225. 1997.
    The topic of self-interest raises large and intractable philosophical questions–most obviously, the question “In what does self-interest consist?” The concept, as opposed to the content of self-interest, however, seems clear enough. Self-interest is interest in one's own good. To act self-interestedly is to act on the motive of advancing one's own good. Whether what one does actually is in one's self-interest depends on whether it actually does advance, or at least, minimize the decline of, one'…Read more
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    Book Review (review)
    Ethics 102 671-671. 1992.
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    A World of Goods
    Philosophy and Phenomenological Research 64 (2): 467-474. 2002.
    Contemporary moral philosophers often divide moral theories into three main types: consequentialism, deontology, and virtue ethics. In Finite and Infinite Goods, Robert Merrihew Adams presents an ethical framework that fits none of these categories. It is founded on a fundamental commitment to the idea that there is a Transcendent Good, to be understood philosophically in realist, non-naturalist terms. As I prefer to put it, Adams starts with a conviction that we live in a World of Goods. In dev…Read more
  •  33
    The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties
    with Jordan Paradise and Charlisse Caga-Anan
    Journal of Law, Medicine and Ethics 36 (2): 361-383. 2008.
    Technology has outpaced the capacity of researchers performing research on human participants to interpret all data generated and handle those data responsibly. This poses a critical challenge to existing rules governing human subjects research. The technologies used in research to generate images, scans, and data can now produce so much information that there is significant potential for incidental findings, findings generated in the course of research but beyond the aims of the study. Neuroima…Read more
  •  3
    Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy
    with Jeffrey P. Kahn
    Journal of Law, Medicine and Ethics 35 (S2): 6-32. 2007.
    Genetic testing poses fundamental questions for insurance. Testing can predict a low probability of future illness and disability, which can help promote the insurability of individuals with a family history of genetic risk, but it can also invite insurers to reject applicants, increase premiums, exclude people with certain illnesses and disabilities, and otherwise adjust the underwriting processes for individuals with certain genotypes. In the workplace, these issues may cause employers who off…Read more
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    Understanding the Role of Genetics in Disability Insurance
    with Jeffrey P. Kahn
    Journal of Law, Medicine and Ethics 35 (S2): 5-5. 2007.
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    Using Preimplantation Genetic Diagnosis to Create a Stem Cell Donor: Issues, Guidelines & Limits
    with Jeffrey P. Kahn and John E. Wagner
    Journal of Law, Medicine and Ethics 31 (3): 327-339. 2003.
    Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo an…Read more