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9Health Care Surrogacy Laws Do Not Adequately Address the Needs of MinorsHastings Center Report 50 (2): 16-18. 2020.A couple and their five‐year‐old daughter are in a car accident. The parents are not expected to survive. The child is transported to a children's hospital, and urgent treatment decisions must be made. Whom should the attending physician approach to make decisions for the child? When such cases arise in, for example, the hospitals where we work, the social worker or chaplain is instructed to use the Illinois Health Care Surrogacy Act as a guidepost to identify a decision‐maker. But in our state …Read more
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18Prisoners as Living Donors: A Vulnerabilities AnalysisCambridge Quarterly of Healthcare Ethics 27 (1): 93-108. 2018.
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20Living Donation by Individuals with Life-Limiting ConditionsJournal of Law, Medicine and Ethics 47 (1): 112-122. 2019.The traditional living donor was very healthy. However, as the supply-demand gap continues to expand, transplant programs have become more accepting of less healthy donors. This paper focuses on the other extreme, asking whether and when individuals who have life-limiting conditions should be considered for living organ donation. We discuss ethical issues raised by 1) donation by individuals with progressive severe debilitating disease for whom there is no ameliorative therapy; and 2) donation b…Read more
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Children as Living DonorsIn David Rodríguez-Arias, Aviva Goldberg & Rebecca Greenberg (eds.), Ethical Issues in Pediatric Organ Transplantation, Springer Verlag. 2016.
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26Respecting Choice in Definitions of DeathHastings Center Report 48 (S4): 53-55. 2018.The definition of death was clearer one hundred years ago than it is today. People were declared dead if diagnosed with permanent cessation of both cardio‐circulatory function and respiratory function. But the definition has been muddled by the development of new technologies and interventions—first by cardiopulmonary resuscitation and ventilators, which were introduced in the mid‐twentieth century, and now by extracorporeal membrane oxygenation, which creates the ability to keep oxygenated bloo…Read more
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18Developing an ethics framework for living donor transplantationJournal of Medical Ethics 44 (12): 843-850. 2018.Both living donor transplantation and human subjects research expose one set of individuals to clinical risks for the clinical benefits of others. In the Belmont Report, the National Commission for the Protection of Human Subjects of Biomedical and Behavior Research articulated three principles to serve as the basis for a research ethics framework: respect for persons, beneficence and justice. In contrast, living donor transplantation lacks a framework. In this manuscript, we adapt the three pri…Read more
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16Pediatric Decision Making Requires Both Guidance and Intervention PrinciplesAmerican Journal of Bioethics 18 (8): 44-46. 2018.In “The Harm Principle Cannot Replace the Best Interest Standard: Problems With Using the Harm Principle for Medical Decision Making for Children,” Bester argues that conceptual and normative diffi...
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18Women & Children in Health Care: An Unequal MajorityHastings Center Report 25 (1): 47. 1995.Book reviewed in this article: Women & Children in Health Care: An Unequal Majority. By Mary Briody Mahowald.
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41The Best Interest Standard: Same Name but Different Roles in Pediatric Bioethics and Child Rights FrameworksPerspectives in Biology and Medicine 60 (2): 186-197. 2017.The "best interest of the child" standard is central to both pediatric bioethics and the child rights community. In pediatric bioethics in the United States, the best interest of the child standard is cited as the guidance principle for parental decision-making.1 Likewise, in the child rights community, the best interest of the child standard is "of paramount consideration" ). Both approaches also recognize parental rights and responsibilities and support a role for the maturing child in the dec…Read more
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26Ethical and Logistical Issues Raised by the Advanced Donation Program “Pay It Forward” SchemeJournal of Medicine and Philosophy 42 (5): 518-536. 2017.The advanced donation program was proposed in 2014 to allow an individual to donate a kidney in order to provide a voucher for a kidney in the future for a particular loved one. In this article, we explore the logistical and ethical issues that such a program raises. We argue that such a program is ethical in principle but there are many logistical issues that need to be addressed to ensure that the actual program is fair to both those who do and do not participate in this program.
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21Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIVJournal of Law, Medicine and Ethics 29 (1): 141-148. 2001.
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18Disclosing Misattributed PaternityBioethics 10 (2): 114-130. 1996.In 1994, the Committee on Assessing Genetic Risks of the Institute of Medicine published their recommendations regarding the ethical issues raised by advances in genetics. One of the Committee's recommendation was to inform women when test results revealed misattributed paternity, but not to disclose this information to the women's partners. The Committee's reason for withholding such information was that “'genetic testing should not be used in ways that disrupt families”. In this paper, I argue…Read more
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28Theory and Practice of Pediatric BioethicsPerspectives in Biology and Medicine 58 (3): 267-280. 2015.The fundamental principle of modern-day bioethics is that “the competent adult has the right to accept or refuse all medical care, including life-saving medical care,” a principle that has been upheld by the U.S. Supreme Court in Bouvia v. Superior Court ) and Cruzan v. Director, Missouri Department of Health ). If the adult lacks decision-making capacity, a surrogate can speak on his or her behalf. The adult may have chosen his or her surrogate through an advance directive; if not, laws assign …Read more
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19Predictive Genetic Testing of Children and the Role of the Best Interest Standard: Currents in Contemporary BioethicsJournal of Law, Medicine and Ethics 41 (4): 899-906. 2013.The genetic testing and screening of children has been fraught with controversy since Robert Guthrie developed the bacterial inhibition assay to test for phenylketonuria and advocated for rapid uptake of universal newborn screening in the early 1960s. Today with fast and affordable mass screening of the whole genome on the horizon, the debate about when and in what scenarios children should undergo genetic testing and screening has gained renewed attention. United States professional guidelines …Read more
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27Religious Exemptions to the Immunization Statutes: Balancing Public Health and Religious FreedomJournal of Law, Medicine and Ethics 25 (2-3): 202-209. 1997.In February 1997, the Committee on Bioethics of the American Academy of Pediatrics updated its position on religious exemptions to medical care. In its earlier statement, the committee noted that forty-four states have religious exemptions to the child abuse and neglect statutes, and they argued for the repeal of these exemptions. The committee did not indude in its statement a position on religious exemptions to childhood immunization requirements that exist in forty-eight states, although this…Read more
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19In Defense of the Hopkins Lead Abatement StudiesJournal of Law, Medicine and Ethics 30 (1): 50-57. 2002.In August 2001, the Maryland Court of Appeals harshly criticized the Kennedy Krieger Institute of Johns Hopkins University for knowingly exposing poor children to lead-based paint. The court’s decision made national news, and is worth examining because it raises several very important issues for research ethics.The research conducted by the Institute was an attempt to understand how successful different lead abatement programs were in reducing continued lead exposure to children. Previously, Jul…Read more
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21Patient Confidentiality and the Surrogate's Right to KnowJournal of Law, Medicine and Ethics 28 (2): 137-143. 2000.Physicians treating newly incapacitated patients often must navigate surrogate decision-makers through a difficult course of treatment decisions. Such a process can be complex. Physicians must not only explain the medical facts and prognosis to the surrogate, but also attempt to ensure that the surrogate arrives at decisions that are consistent with the patient's own values and wishes. Where these values and wishes are unknown, physicians must help surrogates make decisions that reflect the pati…Read more
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12Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIVJournal of Law, Medicine and Ethics 29 (2): 141-148. 2001.The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for the…Read more
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12Solid Organ Donation between StrangersJournal of Law, Medicine and Ethics 30 (3): 440-445. 2002.In August 2000, Arthur Matas and his colleagues de scribed a protocol in which their institution began to accept as potential donors, individuals who came to the University of Minnesota hospital offering to donate a kidney to any patient on the waiting list. Matas and his colleagues refer to these donors as nondirected donors by which is meant that the donors are altruistic and that they give their organs to an unspecified pool of recipients with whom they have no emotional relationship. This pa…Read more
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10All Donations Should Not Be Treated Equally: A Response to Jeffrey Kahn's CommentaryJournal of Law, Medicine and Ethics 30 (3): 448-451. 2002.Jeffrey Kahn and I agree that organ donation by altruistic strangers is acceptable, and that the organ procured this way ought to be allocated equitably. Our agreement in principle, however, is challenged in the details of its application. Specifically, I want to focus on three issues raised by Kahn that merit further discussion: whether relationships matter; how kidneys should be allocated; and the ethical acceptability of the expanded donor pool.
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12Heterozygote Carrier Testing in High Schools Abroad: What are the Lessons for the U.S.?Journal of Law, Medicine and Ethics 34 (4): 753-764. 2006.To promote informed reproductive decisions, prenatal carrier testing is offered to women and couples to provide information about the risk of having a child with one or more genetic conditions. Tay Sachs Disease was one of the first conditions for which prenatal carrier testing was developed. Today, many additional conditions can be tested for, depending on prospective parental interest, family history, or ethnicity. Interestingly, most individuals and couples do not request prenatal carrier inf…Read more
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20Consent Is the Cornerstone of Ethically Valid Research: Ethical Issues in Recontacting Subjects Who Enrolled in Research as a MinorAmerican Journal of Bioethics 15 (10): 61-63. 2015.
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9The Moral and Legal Need to Disclose Despite a Certificate of ConfidentialityAmerican Journal of Bioethics 14 (10): 51-53. 2014.No abstract
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21[Book review] children, families, and health care decision making (review)Ethics 112 (3): 639-641. 2002.
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23Prenatal Testing and Disability Rights (review)Perspectives in Biology and Medicine 45 (4): 624-626. 2002.
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12Motivation, risk, and benefit in living organ donation: a reply to Aaron SpitalCambridge Quarterly of Healthcare Ethics 14 (2): 191-194. 2005.
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University of RochesterHealth Humanities and Bioethics
Department of PhilosophyDistinguished Professor
Rochester, New York, United States of America
Areas of Specialization
Biomedical Ethics |
Genetic Ethics |
Medical Ethics |
Biomedical Ethics, Miscellaneous |
Applied Ethics |