•  527
    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
  •  255
    Transplantation Ethics (review)
    Perspectives in Biology and Medicine 44 (4): 623-628. 2001.
  •  73
  •  70
    Lainie Ross presents a rigorous critical investigation of the development of policy governing the involvement of children in medical research. She examines the shift in focus from protection of medical research subjects, enshrined in post-World War II legislation, to the current era in which access is assuming greater precedence. Infamous studies such as Willowbrook are evidence that before the policy shift protection was not always adequate, even for the most vulnerable groups. Additional safeg…Read more
  •  59
    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.''.
  •  49
    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
  •  47
    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
  •  46
    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
  •  45
    Predictive genetic testing for conditions that present in childhood
    Kennedy Institute of Ethics Journal 12 (3): 225-244. 2002.
    : There is a general consensus in the medical and medical ethics communities against predictive genetic testing of children for late onset conditions, but minimal consideration is given to predictive testing of asymptomatic children for disorders that present later in childhood when presymptomatic treatment cannot influence the course of the disease. In this paper, I examine the question of whether it is ethical to perform predictive testing and screening of newborns and young children for condi…Read more
  •  43
    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
  •  41
    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
  •  40
    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
  •  39
    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
  •  39
    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
  •  37
    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
  •  32
    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
  •  31
    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
  •  30
    Behavioral Genetics: The Clash of Culture and Biology (review)
    Perspectives in Biology and Medicine 44 (1): 146-148. 2001.
  •  29
    : Subpart D of 45 CFR 46 focuses on research involving children. Section 46.407 addresses research that is not otherwise approvable. The research is not otherwise approvable because either (1) it seeks to enroll healthy children, but offers no prospect of direct benefit and entails more than minimal risk; or (2) it seeks to enroll children with a disorder or condition, but offers no prospect of direct benefit and entails more than a minor increase over minimal risk. According to 46.407, such res…Read more
  •  25
    The Best Interest Standard: Same Name but Different Roles in Pediatric Bioethics and Child Rights Frameworks
    with Alissa Hurwitz Swota
    Perspectives 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
  •  24
    The “best interest standard” is the guidance principle for pediatric healthcare in the United States (US) and the United Kingdom (UK). In the UK, the best interest standard may also be used as an intervention principle when parents make good but non-ideal decisions whereas intervention in the US requires a determination of abuse or neglect. I examine whether and how the different uses of the best interest standard influence predictive genetic testing of children
  •  22
    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
  •  19
    Lethal Language, Lethal Decisions
    with Tracy K. Koogler and Benjamin S. Wilfond
    Hastings Center Report 33 (2): 37-41. 2003.
  •  19
    Prenatal Testing and Disability Rights (review)
    Perspectives in Biology and Medicine 45 (4): 624-626. 2002.
  •  19
    Attitudes of African-American parents about biobank participation and return of results for themselves and their children
    with Colin M. E. Halverson
    Journal of Medical Ethics 38 (9): 561-566. 2012.
    Introduction Biobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results. Methods The authors used a mixed-method approach in order to study parents' attitudes towards the return of research results regarding themselves and their children. Participants attended four 2-h, deliberative-engagement sessions held on two consecutive Saturdays. Each session consisted of an educational presentation followed by focus-group disc…Read more