In February 1997, the Committee on Bioethics of the American Academy of Pediatrics (AAP) 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 issue was discussed in committee meetings. In its revised statement, the committee concluded that “The AAP does not support the stringent application of medical neglect laws when children do not receive recommended immunizations.” In this paper, we consider whether failure to immunize one's child is a form of medical neglect and, if so, whether states should repeal their religious exemptions to the immunization statutes. We argue that failure to vaccinate a child properly is medical neglect.

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 (LLC) 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 by individuals who are imminently dying or would die by the donation process itself.

Although national guidelines exist for evaluating the eligibility of potential living donors and for procuring their informed consent, no special protections or considerations exist for potential living donors who are incarcerated. Human research subject protections in the United States are codified in the Federal Regulations, 45 CFR 46, and special protections are given to prisoners. Living donor transplantation has parallels with human subject research in that both activities are performed with the primary goal of benefiting third parties. In this article, we describe what special considerations should be provided to prisoners as potential living donors using a vulnerabilities approach adapted from the human research subject protection literature.

Conflicting U.S. statutes exist governing adolescent sexuality. While parents are allowed to remove their children from sex education, they cannot prevent their children from procuring medical care and contraception without parental awareness or consent. I argue that specialized consent statutes—statutes which empower adolescents to seek confidential reproductive and sexual health care—are an inappropriate solution to adolescent sexuality because (1) they empower individuals whom we otherwise believe are not ready for autonomous decision-making; (2) they endorse deception, which is the wrong message to be sending to our children; and (3) they are illiberal in that they circumvent parental decision-making authority to promote a particular conception of the good life. I argue that we should rescind these statutes and return these decisions to the family.

One of the most interesting aspects of the commentaries on my article, “Adolescent Sexuality and Public Policy: A Liberal Response” (1996a), is what is not mentioned, namely, the issue of statutory rape. In a front-page article in The New York Times, Mireya Navarro writes about

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 (US) professional guidelines — both the American College of Medical Genetics (ACMG)/American Society of Human Genetics (ASHG) statement (1995) and the American Academy of Pediatrics (AAP) Statement on the genetic testing of children (2001) and the new AAP and ACMG joint policy statement (2013) and technical report (2013) — as well as the old UK guidelines by the Working Part of the Clinical Genetics Society (1994) and the new United Kingdom (UK) guidelines by the British Society of Human Genetics (BSHG) (2010) all give the same answer: genetic testing and screening should only be done if it is in the child’s best interest.

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 “The Great Debates” department editor, D. Micah Hester (hesterdm@uams.ed), 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.

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 (TSD) 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 information prior to conception, and carrier testing early in gestation allows only a narrow set of reproductive options. Programs have been designed to increase preconception testing, with variable success. One of the more successful attempts to increase preconception carrier testing uptake internationally has been to offer it to adolescents in high schools.

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 optional, and they are motivated solely or primarily by other-regarding concerns. In contrast, donor parents' other-regarding concerns are inseparable from their own self-regarding concerns. An individual who donates to a stranger is acting altruistically. She may choose to help others to whom she is not emotionally related for a variety of reasons—sympathy, compassion, generosity, or a desire to give something back to humanity. But she does not have an obligation to do so. Although she may benefit as a consequence of donating, this is not her reason for donating. Instead, her action is motivated by a concern for the recipient's own sake. This is what makes the donation altruistic, and it can be justified without any expectation of benefit to the donor. However, although the potential competent donor decides whether the donation is in her best interests, physicians have the right to refuse to perform a transplant if the risks to the donor are too great or the potential benefits to the recipient are too small.

The first principle of the Nuremberg Code (1946) requires the informed consent of the subject. Proxy consent was not addressed until the Declaration of Helsinki (1964). U.S. policies regarding consent for the participation of children in research would not be finalized for almost two more decades (1983) 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 Human Services (DHHS) to conduct a review of the regulations under subpart D and “to consider any modifications necessary to ensure the adequate and appropriate protection of children participating in research, and report the findings of the Secretary to Congress.” In this article, I provide a brief overview of the current informed consent requirements in pediatric research, which include requirements for parental permission and the child's assent. I then examine the moral bases for these requirements; whether the current policies are consistent with these moral foundations; and if not, how the policies ought to be modified.I would like to thank Walter Glannon, Ph.D., for reading an earlier version of this paper. The section of this paper entitled “Parental Permission” is based on an editorial: Ross LF. How many parents should be needed to consent to a child's participation in medical research? American Academy of Pediatrics, Section on Bioethics Newsletter May 2002:1, 4. Dr. Ross's research on children in research is funded by an NIH Grant (NLM 1 G13 LM07472-01).

Medical research is heavily funded: the National Institutes of Health had a budget of over $20 billion in 2001, and even more money was spent by the pharmaceutical industry on research. Children's health issues, however, receive only a small fraction of these funds. In 2001, for example, less than $1 billion of NIH funding was allocated to the National Institute of Child Health and Human Development (NICHD). In part, the problem stems from a modern predisposition to protect children from participating in research.

Several federal policies in the 1990s changed the face of the “typical research subject.” Historically, researchers sought “white men,” but the NIH announced in 1994 that all research would need to include women and minorities, and in 1998, the NIH added the requirement of including children. The shift in policies reflects a shift in focus. When the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research addressed fairness in subject selection in the Belmont Report of 1979, the main concern was ensuring fairness in the distribution of risks.

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.

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 paper represents an ethical and policy critique of the nondirected donation protocol that was implemented at the University of Minnesota in August 1999. Specifically, I address the ethical questions: Whether altruistic living solid organ donations by strangers (nondirected donations) should be permitted? And if so, What are appropriate ethical guidelines for such donations?

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 (ESRD), a consequence of the high-dose chemotherapy she received earlier to destroy her stem cells and prepare her for the bone marrow transplant. Finding a suitable donor for a kidney transplant proved extremely difficult. Desperate, she requested that the donor registry personnel help her locate the individual who earlier was determined to be a compatible donor and asked this now-identifiable individual to consider donating one of her two normally functioning kidneys for a kidney transplant.

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, Julian Chisolm and Mark Farfel, of John Hopkins University, had disclosed the dangers of traditional dust-generating deleading practices. In the current study, Dr. Farfel and colleagues sought to document the longevity of various lead-based paint abatement strategies.

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus (HIV) 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 these practices was the belief that testing was essential for prevention and that patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk.