•  13
    Newborn Screening
    Pediatric Bioethics. forthcoming.
  •  53
    Do Genetic Relationships Create Moral Obligations in Organ Transplantation?
    Cambridge Quarterly of Healthcare Ethics 11 (2): 153-159. 2002.
    In 1999, a case was described on national television in which a woman had enlisted onto an international bone marrow registry with the altruistic desire to offer her bone marrow to some unidentified individual in need of a transplant. The potential donor then was notified that she was a compatible match with someone dying from leukemia and gladly donated her marrow, which cured the recipient of the disease. Years later, though, the recipient developed end-stage renal disease, a consequence of th…Read more
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    In a recent article in this journal, we argued that living organ donation from a parent to a child should be described as a beneficent rather than an altruistic act. Emotional relationships can generate an obligation of beneficence to help those with whom we have these relationships. This may involve an obligation for a parent to donate an organ to a child, even though it entails some risk to the parent. The parent's donation is not altruistic because altruistic acts are not obligatory but optio…Read more
  •  5
    Just Caring
    Hastings Center Report 25 (1): 47-47. 1995.
    Book reviewed in this article: Women & Children in Health Care: An Unequal Majority. By Mary Briody Mahowald.
  •  25
    Lethal Language, Lethal Decisions
    with Tracy K. Koogler and Benjamin S. Wilfond
    Hastings Center Report 33 (2): 37-41. 2003.
    Although many of the congenital syndromes that used to be lethal no longer are, they are still routinely referred to as “lethal anomalies.” But the label is not only inaccurate, it is also dangerous: by portraying as a medical determination what is in fact a judgment about the child's quality of life, it wrests from the parents a decision that only the parents can make.
  •  24
    Health Care Decisionmaking by Children Is It in Their Best Interest?
    Hastings Center Report 27 (6): 41-46. 1997.
    The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within …Read more
  •  49
    Relational Autonomy as the Key to Effective Behavioral Change
    with Jennifer K. Walter
    Philosophy, Psychiatry, and Psychology 20 (2): 169-177. 2013.
    The Common Health problems that plague Americans today are often the result of people’s choices and behaviors: obesity, cigarette smoking, accidental pediatric head trauma owing to failure to properly restrain children, and failure to adhere to medication regimens. For each problem, there is a well-studied effective behavioral intervention: a healthy diet and exercise for obesity, smoking cessation programs to overcome cigarette addiction, appropriate car restraints to prevent accidental head tr…Read more
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    This book examines the ethical issues in pediatric medical research. It argues that policies and practices on the participation of children must focus primarily on minimizing risks. It offers specific recommendations to revise Subpart D of the federal regulations to provide greater protection where necessary and remove obstacles that do not provide additional protection but interfere with access. The book is divided into four sections. Section 1 focuses on the issue of access versus protection i…Read more
  •  539
    Mandatory versus voluntary consent for newborn screening?
    Kennedy Institute of Ethics Journal 20 (4): 299-328. 2010.
    Virtually every infant in the United States (U.S.) undergoes a heel stick within the first week of life to test for a variety of metabolic, endocrine, and hematological conditions as part of state-run universal newborn screening (NBS) programs. In the U.S., NBS began in the 1960s for phenylketonuria (PKU), a metabolic condition that causes intellectual disability if left untreated. I review the history of how NBS came to be a mandatory public health program that did not require parental consent1…Read more
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    Religious Exemptions to the Immunization Statutes: Balancing Public Health and Religious Freedom
    with Timothy J. Aspinwall
    Journal 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
  •  10
    Heterozygote 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.
    The main value of carrier detection in the general population is to determine reproductive risks. In this manuscript I examine the practice of providing carrier screening programs in the school setting. While the data show that high school screening programs can achieve high uptake, I argue that this may reflect a lack of full understanding about risks, benefits, and alternatives, and the right not to know. It may also reflect the inherent coercion in group testing, particularly for adolescents …Read more
  •  21
    Solid Organ Donation Between Strangers
    Journal 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
  •  39
    Patient Confidentiality and the Surrogate's Right to Know
    with Lynn A. Jansen
    Journal 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
  •  13
    All Donations Should Not Be Treated Equally: A Response to Jeffrey Kahn's Commentary
    Journal 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.
  •  15
    In Defense of the Hopkins Lead Abatement Studies
    Journal 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
  •  20
    Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV
    Journal 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
  •  37
    Informed Consent in Pediatric Research
    Cambridge Quarterly of Healthcare Ethics 13 (4): 346-358. 2004.
    The first principle of the Nuremberg Code requires the informed consent of the subject. Proxy consent was not addressed until the Declaration of Helsinki. U.S. policies regarding consent for the participation of children in research would not be finalized for almost two more decades in subpart D of the federal regulations that govern the participation of subjects in research. In October 2000, the Children's Health Act was passed. Title X required the Secretary of the Department of Health and Hum…Read more
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    This CQ department is dedicated to bringing noted bioethicsts together in order to debate some of the most perplexing contemporary bioethics issues. You are encouraged to contact department editor, D. Micah Hester, UAMS/Humanities, 4301 W. Markham St. #646, Little Rock, AR 72205, with any suggestions for debate topics and interlocutors you would like to see published herein
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    Forty Years Later: The Scope of Bioethics Revisited
    Perspectives in Biology and Medicine 53 (3): 452-457. 2010.
    Van Rensselaer Potter was an American biochemist who worked in the McArdle Laboratory for Cancer Research at the University of Wisconsin at Madison. In 1970, in an article in this journal, Potter coined the term bioethics to combine a new discipline that combines biological knowledge with ethics. Potter wrote, “Ethical values cannot be separated from biological facts” (p. 127). His conception was broad-ranging: “We are in great need of a land ethic, a wild-life ethic, a population ethic, a consu…Read more
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    The ethics of type 1 diabetes prediction and prevention research
    Theoretical Medicine and Bioethics 24 (2): 177-197. 2003.
    There are approximately one million cases oftype 1 diabetes in the US, and the incidenceis increasing worldwide. Given that two-thirdsof cases present in childhood, it is criticalthat prediction and prevention research involvechildren. In this article, I examine whethercurrent research methodologies conform to theethical guidelines enumerated by the NationalCommission for the Protection of Human Subjectsof Biomedical and Behavioral Research, andadopted into the federal regulations thatprotect re…Read more
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    This overview describes the breadth of topicscovered in this volume devoted to children inresearch. It summarizes how these articles areinterrelated and how they all respond to thechallenge proposed by the Children's Health Actof 2000: to consider what modifications, ifany, are necessary to current regulations ``toensure the adequate and appropriate protectionof children participating in research.''.
  •  48
    ABSTRACTI argue that parents ought to be allowed to authorize their child's participation as an organ donor for another family member. I introduce a model of decisionmaking for children in intimate families which I call Constrained Parental Autonomy. This model permits wide parental discretion which is constrained absolutely by a broadly defined principle of respect for persons. In general, parental authorization alone is sufficient but I argue that the respect for persons constraint prevents ce…Read more
  •  59
    Disclosing misattributed paternity
    Bioethics 10 (2). 1996.
    ABSTRACTIn 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,…Read more
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    The ethical limits in expanding living donor transplantation
    Kennedy Institute of Ethics Journal 16 (2): 151-172. 2006.
    : The past decade has witnessed the emergence of novel methods to increase the number of living donors. Although such programs are not likely to yield high volumes of organs, some transplant centers have gone to great lengths to establish one or more of them. I discuss some of the ethical and policy issues raised by five such programs: (1) living-paired and cascade exchanges; (2) unbalanced living-paired exchanges; (3) list-paired exchanges; (4) nondirected donors; and (5) nondirected donors cat…Read more