Search

Edmund Pellegrino and David Thomasma's writings have had a worldwide impact on discourse about the philosophy of medicine, professionalism, bioethics, healthcare ethics, and patients' rights. Given their works' importance, it is surprising that commentators have ignored their admission of an unresolved and troubling dilemma and inconsistency in their theory. The purpose of this article is to identify and state what problems worried them and to consider possible solutions. It is argued that their dilemma stems from their concerns about how to justify professional rules restricting colleagues from performing acts they view as direct, active, and formal (intentional) killings, such as physician-assisted suicide, mercy killing, and abortion. It is further argued that their inconsistency is that they both assert and deny that professional colleagues should not use their moral or theological values to impose professional restrictions on other colleagues without adequate philosophical grounds. At risk are their arguments about the nature of an internal morality for medicine, a secular and multicultural basis for medical ethics, and a nonarbitrary way to determine what acts fall outside the ends of medicine. These are arguments they claim also apply to other healthcare professions. The article begins with a brief overview of their key positions to provide the context in which they make their admission. [ABSTRACT FROM AUTHOR]

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates. [ABSTRACT FROM AUTHOR]

The article discusses the author's contention that forced marriages of minors should be considered human rights violations and a form of child abuse, and it mentions data from the United Nations (U.N.) Population Fund which indicates that over 14 million forced marriages of minors occur in 107 low-income countries. American marriage and child abuse laws are examined, along with a 2014 Resolution and Report by the American Bar Association (ABA) and the U.N. Declaration of Human Rights.

The article looks at best interest standard (BIS) which is a guidance principle used in medicine, law and elsewhere instructing surrogates making decisions for individuals lacking decisionmaking capacity to maximally promote their good. It argues that that the BIS is an umbrella concept covering three distinct but interrelated notions that are linked conceptually and historically. It states that the BIS can be used as a standard of reasonableness.

Recalcitrant disputes among health care providers and patients or their families may signal deep cultural differences about what interventions are needed or about clinicians’s professional duties. These issues arose in relation to a mother’s request for hymenoplasty or revirgination for her minor daughter to enable an overseas, forced marriage and protect her from an honor killing. The American College of Obstetrics and Gynecology committee recommends against members performing a hymenoplasty or other female genital cosmetic surgeries due to a lack of data concerning their safety and efficacy. A key issue in such cases is how to determine what is in the minor’s best interest and the scope of health care moral or professional’s duties. The Best Interests Standard can serve as a powerful moral tool for resolving cross-cultural disputes and identifying needed policy. [ABSTRACT FROM PUBLISHER]

The author discusses the role of best interest's standard that is a minimal standard of care and can be used to generate actual duties in specific circumstances. She states that best interests standard is used for expressing an ideal on how to make choices for people without the ability to make decisions. She mentions that the use of best interest's standard as an indeterminate ideal is incorrect with its use as a way to determine actual duties.

Bioethics is best viewed as both a second-order discipline and also part of public discourse. Since their goals differ, some bioethical activities are more usefully viewed as advancing public discourse than academic disciplines. For example, the "Universal Declaration on Bioethics and Human Rights" sponsored by the United Nations Educational, Scientific, and Cultural Organization seeks to promote ethical guidance on bioethical issues. From the vantage of philosophical ethics, it fails to rank or specify its stated principles, justify controversial principles, clarify key terms, or say what is meant by calling potentially conflicting norms 'foundational." From the vantage of improving the public discourse about bioethical problems and seeking ethical solutions in the public arena, however, this document may have an important role. The goals and relations between bioethics as a second-order discipline and public discourse are explored. [ABSTRACT FROM AUTHOR]

An introduction is presented on the theme of this special issue which focuses on the effects genetic research can have on the subjects and their families. As genes are shared and contain information about the past and future, they also make research into them a moral and social issue requiring informed consent and the need to protect confidentiality.

A new analysis of the Best Interests Standard is given and applied to the controversy about testing children for untreatable, severe late-onset genetic diseases, such as Huntington's disease or Alzheimer's disease. A professional consensus recommends against such predictive testing, because it is not in children's best interest. Critics disagree. The Best Interests Standard can be a powerful way to resolve such disputes. This paper begins by analyzing its meaning into three necessary and jointly sufficient conditions showing it: 1. is an "umbrella" standard, used differently in different contexts, 2. has objective and subjective features, 3. is more than people's intuitions about how to rank potential benefits and risks in deciding for others but also includes evidence, established rights, duties and thresholds of acceptable care, and 4. can have different professional, medical, moral and legal uses, as in this dispute. Using this standard, support is given for the professional consensus based on concerns about discrimination, analogies to adult choices, consistency with clinical judgments for adults, and desires to preserve of an open future for children. Support is also given for parents' legal authority to decide what genetic tests to do. [ABSTRACT FROM AUTHOR]

When making decisions for adults who lack decision-making capacity and have no discernable preferences, widespread support exists for using the Best Interests Standard. This policy appeals to adults and is compatible with many important recommendations for persons facing end-of-life choices.Common objections to the policy are discussed as well as different meanings of this Standard identified, such as using it to express goals or ideals and to make practical decisions incorporating what reasonable persons would want. For reasons of consistency, fairness, and compassion, this standard should be used for all incapacitated persons. [ABSTRACT FROM AUTHOR]

A dispute exists about whether bioethics should become a new discipline with its own methods, competency standards, duties, honored texts, and core curriculum. Unique expertise is a necessary condition for disciplines. Using the current literature, different views about the sort of expertise that might be unique to bioethicists are critically examined to determine if there is an expertise that might meet this requirement. Candidates include analyses of expertise based in "philosophical ethics," "casuistry," "atheoretical or situation ethics," "conventionalist relativism," "institutional guidance," "regulatory guidance and compliance," "political advocacy," "functionalism," and "principlism." None succeed in identifying a unique area of expertise for successful bioethicists that could serve as a basis for making it a new discipline. Rather expertise in bioethics is rooted in many professions, disciplines and fields and best understood as a second-order discipline. [ABSTRACT FROM AUTHOR]

The millennium has ushered in a new era of oversight for pediatric research, with renewed moral and legal attention to the upper thresholds of potential harms to which children may be exposed in studies. Watershed events discussed include: First, the deaths of two research subjects, allegedly due to insufficient oversight by the investigators and their institutional review boards. Second, the courts expressed concerns about research policies for incompetent persons or children in two cases, T.D. v. N.Y. and Grimes v. Kennedy Krieger Institute, and reinforcement of the principle that the best interest standard must be used for incompetent persons even in research. Third, the Best Pharmaceutical for Children Act and the Pediatric Rule created incentives as well as uncertainty among Institutional Review Boards and researchers about conducting pediatric studies. Fourth, the Office of Human Research Protection signaled the start of more rigorous oversight with its public rebuke and suspension of a National Institute of Child Health and Human Development pediatric obesity study. Failure to clarify the meaning of the pediatric regulations has sometimes misled generally risk-averse institutions and dedicated investigators about what is permissible. [ABSTRACT FROM AUTHOR]

The Universal Draft Declaration on Bioethics and Human Rights seeks to provide moral direction to nations and their citizens on a series of bioethical concerns. In articulating principles, it ranks respect for human rights, human dignity and fundamental freedoms ahead of respect for cultural diversity and pluralism. This ranking is controversial because it entails the rejection of the popular theory, conventionalist ethical relativism. If consistently defended, this theory also undercuts other United Nations activities that assume member states and people around the world can reach transcultural judgments having moral authority about health, pollution, aggression, rights, slavery, and so on. To illustrate problems with conventionalist ethical relativism and the importance of rejecting it for reasons of health, human rights, human dignity and fundamental freedoms, the widespread practice of female genital circumcision or cutting is discussed. These surgeries are virtually a test case for conventionalist ethical relativism since they are widely supported within these cultures as religious and health practices and widely condemned outside them, including by the United Nations. [ABSTRACT FROM AUTHOR]

Two incompatible policies exist for guiding medical decisions for extremely premature, sick, or terminally ill infants, the Best Interests Standard and the newer, 20-year old “Baby Doe” Rules. The background, including why there were two sets of Baby Doe Rules, and their differences with the Best Interests Standard, are illustrated. Two defenses of the Baby Doe Rules are considered and rejected. The first, held by Reagan, Koop, and others, is a “right-to-life” defense. The second, held by some leaders of the American Academy of Pediatrics, is that the Baby Doe Rules are benign and misunderstood. The Baby Doe Rules should be rejected since they can thwart compassionate and individualized decision-making, undercut duties to minimize unnecessary suffering, and single out one group for treatment adults would not want for themselves. In these ways, they are inferior to the older Best Interests Standard. A “negative” analysis of the Best Interests Standard is articulated and defended for decision-making for all incompetent individuals. [ABSTRACT FROM AUTHOR]

Comments on the so called Baby Doe Rules, a federal regulations in the U.S. about how to treat extremely ill, premature, or terminally ill infants. Views of many neonatologists and pediatricians on impact of the Baby Doe Rules on standards of care and clinicians' and parents' abilities to select individualized treatment plans; Stand of the American Academy of Pediatrics on the Baby Doe Rules; Ruling of the U.S. Supreme Court in case dealing with Baby Doe Rules.

Discusses pediatric research policy and regulation for higher hazard studies that might not offer a direct benefit to children. The argument for excluding racial, ethnic, social, age, economic, environmental circumstance or anything associated with illness as a condition that justifies "no benefit, higher hazard" studies; Recommendations for clarifying rules which allow "no benefit, high hazard" studies, including the justification for a predefined "condition"; View that studies can be compatible with the child's best-interest standard. INSET: Examples of policies with provisions for nontherapeutic....

Classifying research proposals by risk of harm is fundamental to the approval process and the most pivotal risk category in most regulations is that of "minimal risk." If studies have no more than a minimal risk, for example, a nearly worldwide consensus exists that review boards may sometimes: (1) expedite review, (2) waive or modify some or all elements of informed consent, or (3) enroll vulnerable subjects including healthy children, incapacitated persons and prisoners even if studies do not hold out direct benefits to them. The moral and social purposes behind this threshold are discussed along with relevant views from the National Commission, NBAC, NHRPAC, Grimes v. Kennedy Krieger Institute , The Nuremberg Code, and The WMA's Declaration of Helsinki. Representative policies from Australia, Canada, South Africa, the U.S., and CIOMS are reviewed revealing different understandings of this sorting threshold. Six of nine frequently cited interpretations of "minimal risk" are untenable. The "absolute" interpretation of the "routine examination" standard is defended as best. [ABSTRACT FROM AUTHOR]

Introduces a series of articles examining whether the precautionary principle can be applied in the fields of philosophy of medicine and bioethics. Political aspects concerning the shift in the burden of proof needed in the implementation of such principle; Moral and scientific demands of evidence-based public health; Decisions that need to be made under conditions of uncertainty.

The US Federal Code limits research with healthy children to no more than a minimal risk of harm; it restricts research with children who have some disor-der or condition to no more than a minor increase over minimal risk, unless potential harms are offset by poten-tial benefits to them, as in therapeutic studies. Higher risk studies require "407 approval,"named after the rel-evant section of the code describing requirements. Rarely used until recently, 407 approval requirements include Institutional Review Board approval and authorization by the Secretary of the Department of Health and Human Services after consultation with a panel of experts; a period for public comment; and assurances that there are adequate permission, consent, and assent. This 407-ap-proval mechanism contains both procedural and inter-pretative ambiguities, which raise ethical concerns about 1) the expertise represented on advisory panels, 2) the scope of the information offered to the public for com-ment and its potential conflicts with investigators' intel-lectual property or commercial interests, 3) whether any upper level of risk exists, and 4) how it conforms with other policies such as the best interest of the child stan-dard in the law or in medical decision making. Pediatrics 2004;113:1783--1789; children, ethics, experimentation, health policy, human subjects, IRBs, law, pediatrics, re-search. [ABSTRACT FROM AUTHOR]

The U.S. Supreme Court's seminal 1978 Bakke decision, now 25 years old, has an ambiguous and endangered legacy. Justice Lewis Powell's opinion provided a justification that allowed leaders in medical education to pursue some affirmative action policies while at the same time undermining many other potential defenses. Powell asserted that medical schools might have a "compelling interest" in the creation of a diverse student body. But Powell's compromise jeopardized affirmative action since it blocked many justifications for responding to increases in political opposition and legal challenges. The Bakke decision and its moral background and legal legacy are traced and analyzed. Despite recent legal setbacks, the framework sketched by Powell can be used to defend diversity in medical education both morally and legally as a "compelling state interest." Because trust is a central component of the physician-patient relationship and a prerequisite to the profession's ability to provide effective medical care, the state has a compelling interest in training physicians with whom patients can feel comfortable and safe if the population is (1) distrustful; (2) undeserved; (3) faces significant discrimination in the allocation of benefits, goods and services and (4) affirmative action programs would be likely to promote their trust in the system. Similar narrowly-tailored arguments could be used in other professions and for other groups. Bakke is an important background for the pending Grutter case. [ABSTRACT FROM AUTHOR]

Sub-Saharan Africa is the epicenter of the HIV/AIDS epidemic, and in thisissue of the Journal, seven authors discuss the moral, social and medicalimplications of having 70% of those stricken living in this area. Anton A.van Niekerk considers complexities of plague in this region (poverty, denial,poor leadership, illiteracy, women's vulnerability, and disenchantmentof intimacy) and the importance of finding responses that empower its people.Solomon Benatar reinforces these issues, but also discusses the role of globalpolitics in sub-Saharan Africa, especially discrimination, imperialism andits exploitation by first world countries. Given the public health crisis,Udo Schüklenk and Richard E. Ashcroft defend compulsory licensing ofessential HIV/AIDS medications on consequentialist grounds. Keymanthri Moodleydiscusses the importance of conducting research and the need to understanda moderate form of communitarianism, also referred to as “ubuntu”or “communalism”, to help some Africans understand research asan altruistic endeavour. Godfrey B. Tangwa also defends traditional Africanvalues of empathy and ubuntu, discussing how they should be enlisted to fightthis pandemic. Loretta M. Kopelman criticizes the tendency among those outsideAfrica to dismiss the HIV/AIDS pandemic, attributing one source to the ubiquitousand misguided punishment theory of disease. The authors conclude that goodsolutions must be cooperative ventures among countries within and outsideof sub-Saharan Africa with far more support from wealthy countries. [ABSTRACT FROM AUTHOR]

HIV/AIDS strikes with the greatest frequency in sub-Saharan Africa, a regionlacking resources to deal with this epidemic. To keep millions more peoplefrom dying, wealthy countries must provide more help. Yet deeply ingrainedbiases may distance the sick from those who could provide far more aid. Onesuch prejudice is viewing disease as punishment for sin. This ‘punishmenttheory of disease” ascribes moral blame to those who get sick or thosewith special relations to them. Religious versions hold that God punishesthem in order to castigate, encourage virtue, warn, rehabilitate, or maintainsome cosmic order. Its various religious and secular forms are untenable;they lack cogency, risk blaming people unjustly, and jeopardize compassionatecare for people. These views are not only irrational but also dangerous becausethey influence policies and cost lives. We need to cooperate and respond asbefits this global public-health disaster and not engage in the misguidedand bad faith activity of dividing the world into the blameworthy and blameless. [ABSTRACT FROM AUTHOR]

Focuses on the role of federal research regulations on the jurisdiction of pediatric research in Kennedy Krieger Institute in Maryland. Proposition of the safe and inexpensive way to remove lead abatement from homes to prevent poisoning in children; Court ruling on the duties of research on care; Argument on the risk of the study.

This paper reviews the work of several authors, D.W. Brock, D. Callahan, L. Churchill, L.M. Kopelman, R. Tong who consider assumptions and arguments about how to allocated health and dental care to children fairly. They use various approaches including feminist, rights based, and principled considerations, applying general notions of duty or justice to the issues of children's access to basic health and dental care. Two discuss these issues in relation to the work of David Hume. These authors consider children's greatest unmet health needs, including that of dental care, often mistakenly regarded as medically unimportant in terms of children's wellbeing, opportunities, and self-image. They review possible age bias against children in the allocation of health and dental care, the gap between what we say and do where children are concerned, and whether some fundamental shift in social thinking needs to occur. [ABSTRACT FROM AUTHOR]

Children around the world suffer from poor health outcomes due to a lack of basic health and dental care, even in affluent countries. Yet duties exist to provide children these services when a society can afford to do so based on the importance of promoting (a) social utility, (b) autonomy and equality of opportunity, (c) children's well-being or best interest due to their vulnerability, and (d) compassion, sympathy, empathy and solidarity. In addition, (e) these considerations show that, in general, if competent adults should have access to federal- or state-funded health care goods, services, or benefits, then so should children. This argument has limitations; nonetheless, it can help identify systematic biases against children in federal- or state-supported health care programs and gain children access to better basic health and dental care. [ABSTRACT FROM AUTHOR]

A complex problem exists about how to promote the best interests of children as a group through research while protecting the rights and welfare of individual research subjects. The Nuremberg Code forbids studies without consent, eliminating most children as subjects, and the Declaration of Helsinki disallows non-therapeutic research on non-consenting subjects. Both codes are unreasonably restrictive. Another approach is represented by the Council for the International Organizations of Medical Science, the U.S. Federal Research Guidelines, and many other national policies. They allow research ethics committees or institutional review boards to authorize studies with acceptable balances of likely benefits and harms, but neither clarify how to balance them nor explain the meaning of pivotal concepts, like "minimal risk." Paths to the improvement of balancing or consequentialist approaches include (1) improving standardizing of risk assessment, (2) rejecting crude utilitarianism, (3) identifying and justifying normative or moral judgments, and (4) acknowledging extra-regulatory thresholds and deontological or non-negotiable duties to children. [ABSTRACT FROM AUTHOR]

Our cultural disagreements can often be anticipated, negotiated and resolved using shared methods of moral reasoning. This claim is incompatible with any extreme version of communitarianism or strong ethical relativism, which hold that one's culture is the final arbiter of good, bad, right and wrong, or that the rights of the community should trump individual rights within that community. This view is discussed and found to be implausible using the example of common grounds for responding to different cultural views about being truthful in medical practice. Its implausibility stems from difficulties individuating cultures, and accounting for intercultural goals, values and methods. Given our increasingly diverse populations, problems arise as clinicians from one culture try to care respectfully and compassionately for people from other groups. Yet working from shared values and goals, we can use some bridging methods such as discussing grim news in the third person. Claims that something is a cultural belief or attitude, moreover, cannot always be taken at face value. Various meanings of `multiculturalism' are distinguished. [ABSTRACT FROM AUTHOR]

This article introduces the issue which focuses on exploring the relationship between the philosophy of David Hume and bioethics, philosophy of medicine, and medical humanities. Articles in the issue focus on how Hume's work is relevant for discussions of various topics, such as the moral standing of animals, suicide, advocacy, and professional codes. Hume tried to explain the origin of morality and just systems in terms of our psychological and social natures. He also traced similarities between human and animal nature. Articles in the issue are discussed, including an article by Laurence McCullough which traces the influence of Hume's moral philosophy on the history of medical ethics through Hume's influence on his friend, Dr. John Gregory.

Health care systems are widely criticized for limiting doctors' roles as patient-advocates. Yet unrestricted advocacy can be unfairly partial, costly, and prejudicial. This essay considers three solutions to the problem of how to reconcile the demands of a just health care system for all patients, with the value of advocacy for some. Two views are considered and rejected, one supporting unlimited advocacy and another defending strict impartiality. A third view suggested by Hume's moral theory seeks to square the moral demands of professional advocacy and just health care systems. A moral basis for limited advocacy exists when it can be justified from a general or moral vantage. Consequently, ethical aspects of professionalism are not necessarily on a collision course with health care systems incorporating managed care. This solution is compatible with goals regarding the importance of humanistic education and professionalism to build patients' trust. [ABSTRACT FROM AUTHOR]

Bioethics and humanities (inclusive of medicalethics, health care ethics, environmental ethics, research ethics, philosophyand medicine, literature and medicine, and so on) seems like one field; yetcolleagues come from different academic disciplines with distinct languages,methods, traditions, core curriculum and competency examinations. The authormarks six related "framework" features that unite and make it one distinctfield. It is a commitment to (1) work systematically on some of the momentousand well-defined sets of problems about the human condition that drive ourfield (such as death and dying, disability, confidentiality, professionalism,informed consent, abortion, euthanasia, assisted suicide, personhood, health-careresource allocation and environmental ethics, as well as the impact of newtechnologies, including genetic and reproductive); (2) use interdisciplinaryapproaches to unravel them; (3) employ cases and practical reasoning to understandproblems and solve answers; (4) apply teaching methods and goals associatedwith John Dewey to make students better problem-solvers; (5) find morallyjustifiable solutions to the problems driving our field; and (6) seek interdisciplinaryand collaborative scholarship, service or teaching. [ABSTRACT FROM AUTHOR]

Focuses on the decision-making for children and other incompetent persons. Violation of decision-making on their behalfs; Where intervention is necessary in decision-making; Who should have final judgement.

Focuses on how the best-interests standard affects the moral and ethical decisions for children. What is the purpose of the best-interests standard; Who uses the best-interests standard; Attention drawn to the criticisms of the best-interests standard.

Examines the effectiveness of the Americans With Disabilities Act (ADA) in protecting disabled persons from discrimination and prejudice. What year act was passed into law; Advantages and disadvantages of ADA; How persons will qualify for protection under the ADA; Types of restrictions placed on persons who qualify; Analysis of act.

Clarifies the ideas of medical utility and futility in a series of contested cases to help illuminate the moral debate about them. Features of the contested cases; Justification of the empirical, ethical, and evaluative components underlying judgments about utility or futility.

Discusses various aspects concerning the use of anonymous tissue samples obtained in health care institutions without donor consent. Use of HIV seroprevalence studies; Recommendations for further studies on tissue samples; Fulfillment of the elements of informed consent; Importance and benefits of notification.

Argues that under several leading theories of justice, the United States health-delivery system has failed to protect children. Reference to the system's neglect of children being unfair and economically inefficient; Plight of America's uninsured children.

The article presents the response of the authors concerning the review of their book "Ethics and AIDS in Africa: The Challenge to Our Thinking." They give accolade to the reviewer in his appreciation of the hard work it takes to coordinate the moral, medical and legal concerns that HIV/AIDS represents in Africa. They express their agreement about the relevance of the issue on care for people living with the disease. They emphasize that most of the alleged sexual practices in African men is anecdotal.

Discusses the vulnerability of adolescents as research subjects. Manipulation of assent from minors or consent from legally competent adults; Controversy over the Student Athlete Using Random Notification study; Emphasis on consequentialist reasoning.

The author discusses the proposed use of a single threshold for all pediatric studies in the no-benefit aspect. She argues that healthy children in no-benefit pediatric studies should fulfill requirements of minimal risk based on provisions in the U.S. Code of Federal Regulations of 1983. Also discussed are routine check-up of healthy minors, minimal risk procedures as to the International Organization of Medicine (IOM) and fair treatment for different and similarly situated children.

A response by Loretta M. Kopelman to a letter to the editor about her article "Are the 21-Year-Old Baby Doe Rules Misunderstood or Mistaken (Commentary)?," in a 2005 issue is presented.

Presents a response by L. M. Kopelman to a letter to the editor in response to his article "Are the 21-Year-Old Baby Doe Rules Misunderstood or Mistaken?," in the 2005 issue.

Presents a response by Loretta M. Kopelman to a letter to the editor about her article "Are the 21-Year-Old Baby Doe Rules Misunderstood or Mistaken?," in a 2005 issue.