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26Genetic Testing and the Future of Disability Insurance: Ethics, Law & PolicyJournal of Law, Medicine and Ethics 35 (s2): 6-32. 2007.Predictive genetic testing poses fundamental questions for disability insurance, a crucial resource funding basic needs when disability prevents income from work. This article, from an NIH-funded project, presents the first indepth analysis of the challenging issues: Should disability insurers be permitted to consider genetics and exclude predicted disability? May disabilities with a recognized genetic basis be excluded from coverage as pre-existing conditions? How can we assure that private ins…Read more
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24Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family PreferencesAJOB Empirical Bioethics 10 (1): 1-22. 2019.Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands…Read more
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24Review: A World of Goods (review)Philosophy and Phenomenological Research 64 (2). 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
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23Law & Bioethics: From Values to ViolenceJournal of Law, Medicine and Ethics 32 (2): 293-306. 2004.Debate over the relationship of law and bioethics is growing - what the relationship has been and what it should be in the future. While George Annas has praised law and rights-talk for creating modern bioethics, Carl Schneider has instead blamed law for hijacking bioethics and stunting moral reflection. Indeed, as modern bioethics approaches the 40-year mark, historians of bioethics are presenting divergent accounts. In one account, typified by Albert Jonsen, bioethics largely grew out of philo…Read more
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22The Ethical Primate: Humans, Freedom and MoralityPhilosophical Review 106 (1): 131. 1997.This short, readable book, aimed at a popular audience, is concerned to show that a naturalistic view of humankind can be reconciled with a commitment to morality and a belief in human freedom.
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21The Past, Present, and Future of Informed Consent in Research and Translational MedicineJournal of Law, Medicine and Ethics 46 (1): 7-11. 2018.
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21It Is Time to Consult the Children: A Mother Who Faced Mitochondrial Replacement and Her Son Consider the Limits of Genetic ModificationAmerican Journal of Bioethics 20 (8): 41-43. 2020.Volume 20, Issue 8, August 2020, Page 41-43.
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19Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research‐Clinical DivideJournal of Law, Medicine and Ethics 43 (3): 486-501. 2015.Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a “layered” approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in a…Read more
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18Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential SolutionsJournal 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
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18Incidental Findings in CT Colonography: Literature Review and Survey of Current Research PracticeJournal of Law, Medicine and Ethics 36 (2): 320-331. 2008.Incidental fndings of potential medical signifcance are seen in approximately 5-8 percent of asymptomatic subjects and 16 percent of symptomatic subjects participating in large computed tomography colonography studies, with the incidence varying further by CT acquisition technique. While most CTC research programs have a well-defned plan to detect and disclose IFs, such plans are largely communicated only verbally. Written consent documents should also inform subjects of how IFs of potential med…Read more
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18Meaning in Life and Why It Matters (Markus Rüther)Philosophischer Literaturanzeiger 64 (3): 308. 2011.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
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17Debating the Use of Racial and Ethnic Categories in ResearchJournal of Law, Medicine and Ethics 34 (3): 483-486. 2006.Debate over the proper use of racial and ethnic categories in biomedical research has raged in recent years. With the Human Genome Project showing that human beings are overwhelmingly alike genetically, exhibiting more genetic variation within supposed “races” than between them, many have come to doubt the scientific utility of such categories. Yet federal authorities use Directive 15 from the Office of Management and Budget to mandate the continued use of such categories in research. Moreover, …Read more
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17The Continuing Evolution of Ethical Standards for Genomic Sequencing in Clinical Care: Restoring Patient ChoiceJournal of Law, Medicine and Ethics 45 (3): 333-340. 2017.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
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16Genetic Testing and the Future of Disability Insurance: Ethics, Law & PolicyJournal 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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15How Can Law and Policy Advance Quality in Genomic Analysis and Interpretation for Clinical Care?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
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15Addressing a Missing Link in Emergency Preparedness: New Insights on the Ethics of Care in Contingency Conditions from the Minnesota COVID Ethics CollaborativeAmerican Journal of Bioethics 21 (8): 17-19. 2021.We agree with Alfandre and colleagues that ethics guidance for contingency conditions in public health emergencies is urgently needed. The Minnesota COVID Ethics Collabora...
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14International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with AccessJournal of Law, Medicine and Ethics 43 (3): 576-593. 2015.Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the Unite…Read more
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14Health Care Reform and the Future of Physician EthicsHastings Center Report 24 (2): 28-41. 1994.Health care reform proposals threaten to exacerbate tensions physicians already face in trying to balance traditional duties to individual patients against increasing pressure to serve broader societal and institutional goals. To cope with reform, medical ethics must clarify physicians' moral obligations, change existing ethical codes, and develop an ethics of institutions.
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14Interview by Simon CushingJournal of Cognition and Neuroethics (Philosophical Profiles). 2016.Simon Cushing conducted the following interview with Susan Wolf on 29 July 2016.
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13Return of Results in Participant-Driven Research: Learning from Transformative Research ModelsJournal 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
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12The Challenge of Developing Oversight Approaches to NanobiotechnologyJournal of Law, Medicine and Ethics 37 (4): 543-545. 2009.
Chapel Hill, North Carolina, United States of America
Areas of Interest
Philosophy of Action |
Normative Ethics |