Confidentiality is a cornerstone of the physician-patient relationship. Breaches of confidentiality in the context of genetic testing are of particular concern for a number of reasons. First, genetic testing reveals information not only about a particular patient, but also about his or her family members. Second,genetic testing can label healthy people as “at risk,” subjecting them to possible stigmatization or discrimination by third parties. Third, as genetic testing becomes more widespread and is incorporated into primary care, breaches of confidentiality might (...) inadvertently occur more frequently because primary care providers may not be trained to understand the uniqueness of genetic information. Until now, genetic services have been provided primarily by medical geneticists and genetic counselors. However, with the proliferation of new genetic presymptomatic and carrier tests, primary care physicians are going to become increasingly involved in genetic testing. Currently, little is known about physicians’ attitudes toward disclosure of confidential genetic information to third parties. (shrink)

Confidentiality is a cornerstone of the physician-patient relationship. Breaches of confidentiality in the context of genetic testing are of particular concern for a number of reasons. First, genetic testing reveals information not only about a particular patient, but also about his or her family members. Second,genetic testing can label healthy people as “at risk,” subjecting them to possible stigmatization or discrimination by third parties. Third, as genetic testing becomes more widespread and is incorporated into primary care, breaches of confidentiality might (...) inadvertently occur more frequently because primary care providers may not be trained to understand the uniqueness of genetic information. Until now, genetic services have been provided primarily by medical geneticists and genetic counselors. However, with the proliferation of new genetic presymptomatic and carrier tests, primary care physicians are going to become increasingly involved in genetic testing. Currently, little is known about physicians’ attitudes toward disclosure of confidential genetic information to third parties. (shrink)

Cancer susceptibility testing is likely to become routine in medical practice, despite many limitations and unanswered questions. These uncertainties greatly complicate the process of informed consent, creating an excellent opportunity to reconsider exactly how it should be conducted. Research with women's reactions to the availability of genetic susceptibility testing for breast cancer dramatically underscores that informed consent ought to be highly individualized, taking care to discern what patients believe about the disease and its causes and what role they want their (...) physician to play. (shrink)

The ArgumentPressures to lower health-care costs remain an important stimulus to eugenic approaches. Prenatal diagnosis followed by abortion of affected fetuses has replaced sterilization as the major eugenic technique. Voluntary acceptance has replaced coercion, but subtle pressures undermine personal autonomy. The failure of the old eugenics to accurately predict who will have affected offspring virtually disappears when prenatal diagnosis is used to predict Mendelian disorders. However, when prenatal diagnosis is used to detect inherited susceptibilities to adult-onset, common, complex disorders, considerable (...) uncertainty is inherent in the prediction. Intolerance and the resurgence of genetic determinism are current pressures for a eugenic approach. The increasing use of carrier screening and of prenatal diagnosis could itself generate intolerance for those who refuse the procedures. Genetic determinism deflects society from social action that would reduce the burden of disease far more than even the maximum use of eugenics. (shrink)

The Genetic Privacy Act is a comprehensive effort to protect individuals from unauthorized analysis of their DNA and from unauthorized disclosure of information resulting from genetic analysis. Irrespective of merit, every bill must survive legislative scrutiny. This is a considerable challenge, particularly for a bill as complex and far-reaching as the GPA. To illustrate my point, I describe the fate of two bills introduced into the Maryland Senate in 1995 by Senator Jennie Forehand. The first, also entitled the Genetic Privacy (...) Act, was a slightly modified version of the model legislation prepared by Annas, Glantz, and Roche. After a hearing, the bill received a 9-2 unfavorable vote from the Economic and Environmental Affairs Committee. The second was a much shorter bill, DNA Testing – Informed Consent and Confidentiality, which simply stated that “DNA analysis may only be performed with the informed consent of the person being analyzed” and that the results of such analysis “are the exclusive property of the person tested, are confidential, and may not be disclosed without the consent of the person being tested.” This bill had a hearing but was never put to a vote by the Judicial Proceedings Committee. My principal aim is to examine the testimony on these bills. I will conclude with some suggestions about accomplishing the goals of genetic privacy legislation. (shrink)

Little is known about health care professionals’ perceptions regarding what it means to treat patients and families with respect and dignity in the intensive care unit (ICU) setting. To address this gap, we conducted nine focus groups with different types of health care professionals (attending physicians, residents/fellows, nurses, social workers, pastoral care, etc.) working in either a medical or surgical ICU within the same academic health system. We identified three major thematic domains, namely, intrapersonal (attitudes and beliefs), interpersonal (behaviors), and (...) system (contextual) factors that influence treatment with respect and dignity. Participants suggested strategies for improving treatment of patients and families in the ICU with respect and dignity, as well as the related need for enhancing respect among the multidisciplinary team of clinicians. Implementing these strategies will require innovative educational interventions and leadership. Future research should focus on the design and evaluation of such interventions on the quality of care. (shrink)

Biomedical science is usually framed for the public in terms of its “promise.” When a breakthrough results from scientific inquiry, that promise is translated into a hope for a cure. The “promise” of such advances in biomedical research can have a paradoxical effect. In the case of pediatric neuromuscular disease, rather than reducing suffering, the expectation of cure can be a burden—both physically and emotionally—for affected children and their families. If a family expects a cure, it is likely to do (...) everything possible to help the child live as long as possible, in the hope that the child will eventually receive it. I am not arguing that the appropriate response to the paradox of promise is to impede scientific progress. What is needed, however, is a broader conception of hope—one that values hope for a good day, a good quality of life, good relationships, or even a good death—alongside the hope for a cure. (shrink)

Caring for critically ill and dying patients often triggers both professional and personal growth for physician trainees. In pediatrics, the neonatal intensive care unit is among the most distressing settings for trainees. We used longitudinal narrative writing to gain insight into how physician trainees are challenged by and make sense of repetitive, ongoing conflicts experienced as part of caring for very sick and dying babies. The study took place in a 45-bed, university-based NICU in an urban setting in the United (...) States. From November 2009 to June 2010 we enrolled pediatric residents and neonatology fellows at the beginning of their NICU rotations. Participants were asked to engage in individual, longitudinal narrative writing about their “experience in the NICU.” Thematic narrative analysis was performed. Thirty-seven physician trainees participated in the study. The mean number of narratives per trainee was 12; a total of 441 narratives were available for analysis. Conflict was the most pervasive theme in the narratives. Trainees experienced conflicts with families and conflicts with other clinicians. Trainees also described multiple conflicts of identity as members of the neonatology team, as members of the medical profession, as members of their own families, and as members of society. Physician trainees experience significant conflict and distress while learning to care for critically ill and dying infants. These conflicts often led them to question their own morals and their role in the medical profession. Physician trainees should be educated to expect various types of distress during intensive care rotations, encouraged to identify their own sources of distress, and supported in mitigating their effects. (shrink)

Prenatal ultrasound use is skyrocketing despite limited evidence of improved outcomes. One factor driving this trend is the widely recognized psychological appeal of real-time fetal imaging. Meanwhile, considering imperfect safety evidence, U.S. professional guidelines dictate that prenatal ultrasound—a screening test—should be governed by expected clinical benefits—an opportunity for intervention. However, when women’s healthcare professionals themselves are pregnant, their access to ultrasound technology permits informal, personal use that may deviate from standard-of-care, e.g., for reassurance. Highlighting a poignant case wherein a pregnant (...) obstetrician’s personal ultrasound use had unforeseen negative consequences, we explore this issue within context of professional ethics and informal medical care. We discuss how women’s health professionals’ self-care may influence and inform prenatal care at large. We advocate curtailing informal prenatal ultrasound use, but also potentially broadening accepted indications for or relaxing proscriptions against ultrasounds for patients. Further research and updated, evidence-based, ethically-sound guidelines are needed. (shrink)

We have never been so aware of masks. They were in short supply in the early days of COVID-19, resulting in significant risk to health care workers. Now they are highly politicized with battles about mask-wearing protocols breaking out in public. Although masks have obtained a new urgency and ubiquity in the context of COVID-19, people have thought about both the literal and metaphorical role of masks in medicine for generations. In this paper, we discuss three such metaphors—the masks of (...) objectivity, of infallibility, and of benevolence—and their powerful role in medicine. These masks can be viewed as inflexible barriers to communication, contributing to the traditional authoritarian relationship between doctor and patient and concealing the authenticity and vulnerability of physicians. COVID masks, by contrast, offer a more nuanced and morally complex metaphor for thinking about protecting people from harm, authentic and trustworthy communication, and attention to potential inequities both in and beyond medical settings. We highlight the morally relevant challenges and opportunities that masks evoke and suggest that there is much to be gained from rethinking the mask metaphor in medicine. (shrink)

Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...) or?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice. (shrink)

When there have been substantial failures by institutional leadership in their oversight responsibility to protect research integrity, the public should demand that these be recognized and addressed by the institution itself, or the funding bodies. This commentary discusses a case of research failures in developing genomic predictors for cancer risk assessment and treatment at a leading university. In its review of this case, the Office of Research Integrity, an agency within the US Department of Health and Human Services, focused their (...) report entirely on one individual faculty member and made no comment on the institution’s responsibility and its failure to provide adequate oversight and investigation. These actions missed an important opportunity to emphasize the institution’s critical responsibilities in oversight of research integrity and the importance of institutional transparency and accountability. (shrink)

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced (...) a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received. (shrink)

Despite wide recognition of the importance of treating patients with respect and dignity, little is known about what constitutes treatment in this regard. The intensive care unit (ICU) is a unique setting that can pose specific threats to treatment with respect and dignity owing to the critical state of patients, stress and anxiety amongst patients and their family members, and the highly technical nature of the environment. In attempt to understand various stakeholders’ perspectives of treatment with respect and dignity, patients (...) and family members were interviewed, a wide range of health care professionals participated in focus groups, and third party observers took field notes of interactions in the ICU. This paper compares and contrasts the data that were generated using these different methods. Triangulating the data in this way contributes to a more complete and nuanced understanding of treatment with respect and dignity in the ICU. (shrink)

Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a (...) person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU. (shrink)

It is simple enough to claim that academic research institutions ought to be trustworthy. Building the culture and taking the steps necessary to earn and preserve institutional trust are, however, complex processes. The experience motivating this special report—a request for the Center for Talented Youth at Johns Hopkins University to collaborate on research regarding the genetics of intelligence—illustrates how ensuring institutional trustworthiness can be in tension with a commitment to fostering research. In this essay, we explore the historical context for (...) biomedical research institutions like Johns Hopkins that have worked to build local community trust. In so doing, we consider how the example under focus in this special report can lead to greater consideration of how research institutions balance fostering trust with their other commitments. (shrink)

Treating patients and their family members with respect and dignity is a broadly accepted goal of health care. The work presented in this article is part of a larger project aimed at better understanding what constitutes treatment with respect and dignity in the ICU to improve the care that patients and family members receive in this regard. Direct observation was selected as one of the methods to facilitate this understanding because it provides the opportunity to see and document what actually (...) occurs during encounters among patients, their families, and clinicians. This article reports seven major thematic domains and many subthemes that together create a detailed account of the interpersonal and environmental components of treatment with respect and dignity. Attention to these components might enhance the experience and treatment of patients and family members. (shrink)

A growth in consumer and media ethical consciousness has resulted in the need for organizations to ensure that members understand, share and project an approved and unified set of ethics. Thus understanding which variables are related to sharing and variation of ethical reasoning and moral intent, and the relative strength of these variables is critical. While past research has examined individual (attitudes, values, etc.), social (peers, significant others, etc.) and organizational (codes of conduct, senior management, etc.) variables, it has focused (...) on their influence on the individual – and not on their role in relation to patterns of group sharing and variation in an organization. Introduced as a new methodology to study ethics, microcultural analysis stipulates that to explain patterns of sharing and variation, one must understand how individual, social and organizational variables influence sharing and variation. Key hypotheses predict that managers who share in individual, social or organizational determinants will be more likely to share in ethical reasoning and moral intent. Qualitative and quantitative research supports the key hypotheses, finding social ties, personal moral intensity, Machiavellianism, locus of control and codes of ethics as significant determinants. Individuals who share in these determinants are more likely to share in ethical reasoning and moral intent. Additionally, regression analysis reveals social ties and personal moral intensity to be the strongest determinants. Based on these results, managerial recommendations focus on a holistic approach, manipulating these three determinants to cultivate a unified code of ethics within an organization. (shrink)

Cognitive Science is a single-source undergraduate text that broadly surveys the theories and empirical results of cognitive science within a consistent computational perspective. In addition to covering the individual contributions of psychology, philosophy, linguistics, and artificial intelligence to cognitive science, the book has been revised to introduce the connectionist approach as well as the classical symbolic approach and adds a new chapter on cognitively related advances in neuroscience. Cognitive science is a rapidly evolving field that is characterized by considerable contention (...) among different views and approaches. Cognitive Science presents these in a relatively neutral manner. It covers many new orientations theories and findings, embedding them in an integrated computational perspective and establishing a sense of continuity and contrast with more traditional work in cognitive science. The text assumes no prerequisite knowledge, introducing all topics in a uniform, accessible style. Many topics, such as natural language processing and vision, however, are developed in considerable depth, which allows the book to be used with more advanced undergraduates or even in beginning graduate settings. A Bradford Book. (shrink)

Despite an extensive amount of research studying the influence of significant others on an individual's ethical behavior, researchers have not examined this variable in the context of organizational group boundaries. This study tests actual and perceptual sharing and variation in ethical reasoning and moral intent within and across functional groups in an organization. Integrating theory on ethical behavior, group dynamics, and culture, it is proposed that organizational structure affects cognitive structure. Departmental boundaries create stronger social ties within the group as (...) well as intergroup biases between the groups. Thus individuals will be more likely to share in ethical reasoning and moral intent with members of their own functional group (in-group) than with members of other functional groups (out-group). Additionally, they will perceive that they are more likely to share in ethical reasoning and moral intent with in-group members than with out-group members. Responding to two versions of two ethical scenarios, respondents contrasted their own ethical behavior to their expected ethical behavior of in-group and out-group members. Empirical results confirmed the hypotheses. Organizational group boundaries create actual as well as perceptual sharing and variation in ethical reasoning and moral intent. Furthermore, when comparing perceptual sharing to actual sharing, results show that individuals understate their sharing of ethical reasoning and moral intent with out-group members and overstate their sharing with in-group members. As organizational boundaries can create actual and perceived differences between groups that could lead to inter-group conflict, suggestions for management focus on removing or blurring inter-group boundaries. (shrink)

In part one, I identify the core logical structure of the precautionary principle and distinguish it from the various key concepts that appear in the many different formulations of the principle. I survey these concepts and suggest a program of further conceptual analysis. In part two, I examine a particular version of the precautionary principle dubbed “the catastrophe principle” and criticize it in light of its similarities to the principle at work in Pascal’s Wager. I conclude with some suggestions for (...) advocates of the precautionary principle who wish their formulation to avoid the pitfalls confronting the catastrophe principle. (shrink)

The conflict between agency and stakeholder theories of the firm has long been entrenched in organizational and management literature. At the core of this debate are two competing views of the firm in which assumptions and process contrast each other so sharply that agency and stakeholder views of the firm are often described as polar opposites. The purpose of this paper is to show how agency theory can be subsumed within a general stakeholder model of the firm. By analytically deconstructing (...) the assumptions of agency theory, it is argued that agency theory: (1) must include a recognition of stakeholders; (2) requires a moral minimum to be upheld, which places four moral principles above the interests of any stakeholders, including shareholders; (3) consists of contradictory assumptions about human nature and which give rise to the equally valid assumptions of trust, honesty and loyalty to be infused into the agency relationship. In this way, stakeholder theory is argued to be the logical conclusion of agency theory. Empirical hypotheses are presented as a means to substantiate this claim. (shrink)

Recent discoveries in physics, cosmology and biochemistry have captured the public imagination and made the Design Argument - the theory that God created the world according to a specific plan - the object of renewed scientific and philosophical interest. This accessible but serious introduction to the design problem brings together new perspectives from prominent scientists and philosophers including Paul Davies, Richard Swinburne, Sir Martin Rees, Michael Behe, Elliot Sober and Peter van Inwagen.

Elementary students need authentic learning experiences with community-based topics to motivate them, help develop inquiry skills, apply academic content, and connect their learning beyond the context of the classroom. In particular, the study of food, agriculture, and natural resources in elementary classrooms can bring learning to life. Elementary teachers’ decisions to teach non-required topics are informed by their personal beliefs and contextual pressures to teach required content that is aligned with state learning standards. The purpose of this descriptive study is (...) to explore the factors underlying elementary teachers’ beliefs related to the integration of food, agricultural, and natural resources (FANR) topics and activities into their classrooms. Multivariate analyses were conducted to identify factors and determine the relationship between teacher beliefs and behaviors. Two factors explained the extent teachers integrated FANR topics and activities into their classrooms: (1) if they agreed FANR topics fit in academic subjects, and (2) if they saw the educational value of integrating FANR topics and activities into the elementary school curricula. Teachers’ epistemological and motivational beliefs play a role when they consider adopting an enrichment program to integrate non-required topics into their elementary school classrooms. The findings suggest teachers’ perceptions of the educational benefits and fit within academic content areas are more important factors than their views and attitudes of the careers and industry connected to an enrichment program when teachers choose to adopt and integrate topics and activities that would enrich student learning in their classrooms. (shrink)

The Fine-Tuning Argument (FTA) is a variant of the Design Argument for the existence of God. In this paper the evidence of fine-tuning is explained and the Fine-Tuning Design Argument for God is presented. Then two objections are covered. The first objection is that fine-tuning can be explained in terms of the existence of multiple universes (the 'multiverse') plus the operation of the anthropic principle. The second objection is the 'normalizability problem'– the objection that the Fine-Tuning Argument fails because fine-tuning (...) is not actually improbable. (shrink)

The multiverse hypothesis is one of the leading proposed explanations of cosmic fine-tuning for life. One common objection to the multiverse hypothesis is that, even if it were true, it would not explain why this universe, our universe, is fine-tuned for life. To think it would so explain is allegedly to commit “the inverse gambler's fallacy.” This paper presents what the inverse gambler's fallacy is supposed to be, then surveys the discussion of it in the philosophical literature of the last (...) 35 years. (shrink)

When it is suggested that the fine‐tuning of the universe for life provides evidence for a cosmic designer, the multiple‐universe hypothesis is often presented as an alternative. Some philosophers object that the multiple‐universe hypothesis fails to explain why this universe is fine‐tuned for life. We suggest the “This Universe” objection is no better than the “This Planet” objection. We also fault proponents of the “This Universe” objection for presupposing that we could not have existed in any other universe and that (...) the values of the free parameters of the Universe could have been different. Lastly, we reflect on why fine‐tuning for life needs explaining. (shrink)

The discovery that the universe is fine-tuned for life ? a discovery to which the phrase ?the anthropic principle? is often applied ? has prompted much extra-cosmic speculation by philosophers, theologians, and theoretical physicists. Such speculation is referred to as extra-cosmic because an inference is made to the existence either of one unobservable entity that is distinct from the cosmos and any of its parts (God) or of many such entities (multiple universes). In this article a case is mounted for (...) the sceptical position that cosmic fine-tuning does not support an inference to anything extra-cosmic. To that end three definitions of ?fine-tuned for life? are proposed: the ?slight difference? definition, the (unconditional) probability definition, and John Leslie?s conditional probability definition. These three definitions are the only ones suggested by the relevant literature on fine-tuning and the anthropic principle. Since on none of them do claims of fine-tuning warrant an inference to something extracosmic, it is concluded that there is no definition of ?fine-tuned for life? serving this function. (shrink)