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7Bioethics, Public Moral Argument, and Social Responsibility (edited book)Routledge. 2011._Bioethics, Public Moral Argument, and Social Responsibility_ explores the role of democratically oriented argument in promoting public understanding and discussion of the benefits and burdens of biotechnological progress. The contributors examine moral and policy controversies surrounding biomedical technologies and their place in American society, beginning with an examination of discourse and moral authority in democracy, and addressing a set of issues that include: dignity in health care; th…Read more
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41What Research Ethics Should Learn from Genomics and Society Research: Lessons from the ELSI Congress of 2011Journal of Law, Medicine and Ethics 40 (4): 1008-1024. 2012.In much the same way that genomic technologies are changing the complexion of biomedical research, the issues they generate are changing the agenda of IRBs and research ethics. Many of the biggest challenges facing traditional research ethics today — privacy and confidentiality of research subjects; ownership, control, and sharing of research data; return of results and incidental findings; the relevance of group interests and harms; the scope of informed consent; and the relative importance of …Read more
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25Shaping Our Selves: On Technology, Flourishing, and a Habit of Thinking by Erik ParensKennedy Institute of Ethics Journal 26 (1): 5-10. 2016.In Shaping Our Selves, Erik Parens offers both a personal history of bioethics and a cleverly clarifying lens to train on disputes in bioethics about emerging technologies. The question for readers is whether this lens, as useful as it is, leaves too much outside our field of vision. Parens, born in 1957, comes from the first wave of bioethics scholars—those of us who still mostly happened into bioethics as a field, before it was sufficiently well-established to be identified as a career pathway…Read more
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21Experimental Treatment Oxymoron or Aspiration?Hastings Center Report 25 (4): 6-15. 1995.Giving up the increasingly troubled distinction between “experiment” and “treatment” would make it easier to focus on informed consent and harder to beg questions about uncertainty and shared decisionmaking in medicine.
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26Accident & Desire: Inadvertent Germline Effects in Clinical ResearchHastings Center Report 33 (2): 23-30. 2003.Gene therapy is still a very crude way of treating very complicated problems. It's hard to get new genes to go where they're needed, and hard to keep them from going where they're not wanted. The worst‐case scenario is that they find their way into a patient's germ cells—eggs or sperm—and end up harming the patient's offspring. Yet this possibility is hard to study in human trials, and would be hard to deal with in the clinic. It should, instead, simply be avoided. Doing so requires fundamentall…Read more
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51Loss of Possession: Concussions, Informed Consent, and AutonomyJournal of Law, Medicine and Ethics 42 (3): 334-343. 2014.The principle of informed consent is so firmly established in bioethics and biomedicine that the term was soon bowdlerized in common practice, such that engaging in the informed decision-making process with patients or research subjects is now often called “consenting” them. This evolution, from the original concept to the rather questionable coinage that makes consent a verb, reveals not only a loss of rhetorical precision but also a fundamental shift in the potential meaning, value, and implem…Read more
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35Conscience, Courage, and “Consent”Hastings Center Report 46 (2): 30-32. 2016.On September 8, 2015, the Department of Health and Human Services issued a Notice of Proposed Rule Making to revise the Federal Policy for the Protection of Human Subjects, widely known as the “Common Rule.” The NPRM proposes several changes to the current system, including a dramatic shift in the approach to secondary research using biospecimens and data. Under the current rules, it is relatively easy to use biospecimens and data for secondary research. This approach systematically facilitates …Read more
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17Transparency in Neonatal Intensive CareHastings Center Report 22 (3): 18-25. 1992.Medical teams care for severely premature infants under conditions of emergency and uncertainty that make parental involvement very difficult. Parents can be invited into a decisional relationship with the team that enables them to assess more fully the meaning of their child's illness.
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31Defining and Describing Benefit Appropriately in Clinical TrialsJournal of Law, Medicine and Ethics 28 (4): 332-343. 2000.Institutional review boards and investigators are used to talking about risks of harm. Both low risks of great harm and high risks of small harm must be disclosed to prospective subjects and should be explained and categorized in ways that help potential subjects to understand and weigh them appropriately. Everyone on an IRB has probably spent time at meetings arguing over whether a three-page bulleted list of risk description is helpful or overkill for prospective subjects. Yet only a small fra…Read more
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50Bad Blood Thirty Years Later: A Q&A with James H. JonesJournal of Law, Medicine and Ethics 40 (4): 867-872. 2012.Historian James H. Jones published the first edition of Bad Blood, the definitive history of the Tuskegee Syphilis Experiment, in 1981. Its clear-eyed examination of that research and its implications remains a bioethics classic, and the 30-year anniversary of its publication served as the impetus for the reexamination of research ethics that this symposium presents. Recent revelations about the United States Public Health Service study that infected mental patients and prisoners in Guatemala wi…Read more
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30An open letter to institutional review boards considering northfield laboratories' polyheme® trialAmerican Journal of Bioethics 6 (3). 2006.At the time of this writing, a widely publicized, waived-consent trial is underway. Sponsored by Northfield Laboratories, Inc. (Evanston, IL) the trial is intended to evaluate the emergency use of PolyHeme®, an oxygen-carrying resuscitative fluid that might prevent deaths from uncontrolled bleeding. The protocol allows patients in hemorrhagic shock to be randomized between PolyHeme® and saline in the field and, still without consent, randomized between PolyHeme® and blood after arrival at an eme…Read more
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32There's A Lot We Don't Know (and We Ought to Say So)American Journal of Bioethics 13 (12): 20-21. 2013.No abstract
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5Moral Entanglements: The Ancillary-Care Obligations of Medical Researchers, written by Henry S. RichardsonJournal of Moral Philosophy 12 (6): 787-789. 2015.
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54Athlete or Guinea Pig? Sports and Enhancement ResearchStudies in Ethics, Law, and Technology 1 (1). 2007.
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16The Importance of Amicable and Productive DisagreementJournal of Medicine and Philosophy 40 (3): 286-288. 2015.
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40Vulnerability to influence: A two-way streetAmerican Journal of Bioethics 4 (3). 2004.This Article does not have an abstract