Contributors: Steven M. Cahn, James W. Nickel, J. L. Cowan, Paul W. Taylor, Michael D. Bayles, William A. Nunn III, Alan H. Goldman, Paul Woodruff, Robert A. Shiver, Judith Jarvis Thomson, Robert Simon, George Sher, Robert Amdur, Robert K. Fullinwider, Bernard R. Boxhill, Lisa H. Newton, Anita L. Allen, Celia Wolf-Devine, Sidney Hook, Richaed Waaserstrom, Thomas E. Hill, Jr., John Kekes.

The theme of this paper is that people in Northeast Brazil refuse to let a good person who helped them during his (or her) lifetime die. They do this through several of the religious traditions practiced in the region. Beings, human and other, now in another plane of reality established in modern thinking, cross the conceptual divide and return through mediums or other intermediaries to heal the living. We examine two religious traditions, “folk” or “popular” Catholicism and Kardecist‐Spiritism, focusing on (...) the spirit of Argeu Hebster, a medical doctor who lived in the municipality of Marangaupe in the state of Ceará until his death in 1977. The return of the doctor is told in stories told to the authors while doing ethnography that provide the data used in analyzing the enchanted worlds of the two religions. (shrink)

This article examines whether a group of Brazilian Kardecist-Spiritists are using the symbols of medicine and science to gain respectability and to better promote their beliefs and ritual activities or whether they are using the view of the world proposed by their founder to forge a new paradigm to replace science, as we know it. Their therapeutic practices, which range from the performance of surgeries without anesthesia and antisepsis to "teleporting" the astral bodies of patients to the spirit world where (...) they are treated for illnesses acquired during previous lifetimes are described and analyzed in terms of their worldview which postulates reincarnation. Data indicating positive results from a sample of patients treated for illnesses they claim to be caused by experiences in previous lives are presented. (shrink)

Victor Turner's view of pilgrimage is reexamined and questioned using data collected at the shrine to Saint Francis of Assisi in Canindi, a small town in northeast Brazil. Turner's view of pilgrimage as a liminal state in which the pilgrim is out of structure is summarized in terms of his major theoretical assumptions and objectives. The shrine in Canindé and the pilgrimage there are described. Pilgrimage is examined in terms of the symbolic assumptions of Brazilian "Popular" Catholicism and culture. The (...) author shows it to be a product of a relationship between the pilgrim and the saint in which the pilgrimage is made in fulfillment of a promise made. The pilgrim to Canindi, and other shrines in Brazil, is shown to be fulfilling the obligations of a patron‐client type of exchange with the saint and consequently not out of structure. The author concludes that the patron‐client exchange imagery is better suited to the analysis of pilgrimage in Brazil and Latin America than Turner's view of liminality. (shrink)

Ecstasy, Ritual, and Alternate Reality: Religion in. Pluralistic World by Felicitas D. Goodman. Bloomington and Indianapolis: Indiana.University Press, 1988. Pp. 193. ISBN 0‐253‐31899‐8.

Gilbert Herdt and Michele Stephen. eds. The Religious Imagination in New Guinea. New Brunswick and London: Rutgers University Press, 1989. ISBN 0‐8135‐ 1458‐4. Hardcover $48.00. Paperback $16.00. Pp. 262.

The modern presidency emerged not from an effort to escape constitutional propriety, as Tulis argues, but, rather, to emancipate presidents from the localized political parties of the nineteenth century, which had come to be viewed as sites of provincial and corrupt forms of popular rule. As the troubled tenure of George W. Bush suggests, contemporary presidents are torn between the public expectation that they stand apart from party politics and act as the chief executive of the administrative state; and their (...) role as party leaders, which links them to political allies in Congress and loyalists in the electorate. In its contribution to the development of a “new” national programmatic party system, the Bush administration reveals the potential for a novel, disturbing meld of party and administration, in which presidents seek to exploit the powers of the modern executive office for partisan gain. (shrink)

Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. (...) Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. Results: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband’s genomic results relevant to family members’ health ought to be offered. While informants endorse each individual’s choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. Conclusions: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy—without attention to how the broad social and cultural context shapes preferences within families—cannot be the sole foundation of policy. (shrink)

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

The myside bias in written argumentation entails excluding other side information from essays. To determine the locus of the bias, 86 Experiment 1 participants were assigned to argue either for or against their preferred side of a proposal. Participants were given either balanced or unrestricted research instructions. Balanced research instructions significantly increased the use of other side information. Participants' notes, rather than search patterns, predicted the myside bias. Participants who defined good arguments as those that can be “proved by facts” (...) were more prone towards the myside bias. In Experiment 2, 84 participants of high and low argumentation ability read a text called “More Than Just the Facts” designed to contradict this fact-based argumentation schema. For high argumentation ability participants, the intervention reduced the myside bias, but for low ability participants it increased. The roots of the myside bias are underdeveloped argumentation schemata leading to misconceptions about research and argumentation. (shrink)

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the “web” of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats.

Debate over the proper use of racial and ethnic categories in biomedical research has raged in recent years. With the Human Genome Project showing that human beings are overwhelmingly alike genetically, exhibiting more genetic variation within supposed “races” than between them, many have come to doubt the scientific utility of such categories. Yet federal authorities use Directive 15 from the Office of Management and Budget to mandate the continued use of such categories in research. Moreover, researchers studying health disparities argue (...) that data collection using racial and ethnic categories is necessary to determine whether conditions and care vary by race and ethnicity. Epidemiologists also defend the use of racial and ethnic categories to understand contributors to disease such as the stress of experiencing racial prejudice and reduced access to care because of bias. (shrink)

Bioethics has paid surprisingly little attention to the special problems faced by women and to feminist analyses of current health care issues other than ...

In this paper we examine the case of Tay, the Microsoft AI chatbot that was launched in March, 2016. After less than 24 hours, Microsoft shut down the experiment because the chatbot was generating tweets that were judged to be inappropriate since they included racist, sexist, and anti-Semitic language. We contend that the case of Tay illustrates a problem with the very nature of learning software that interacts directly with the public, and the developer's role and responsibility associated with it. (...) We make the case that when LS interacts directly with people or indirectly via social media, the developer has additional ethical responsibilities beyond those of standard software. There is an additional burden of care. (shrink)

Answering important public health questions often requires collection of sensitive information about individuals. For example, our understanding of how HIV is transmitted and how to prevent it only came about with people's willingness to share information about their sexual and drug-using behaviors. Given the scientific need for sensitive, personal information, researchers have a corresponding ethical and legal obligation to maintain the confidentiality of data they collect and typically promise in consent forms to restrict access to it and not to publish (...) identifying data.The interests of others, however, can threaten researchers' promises of confidentiality when legal demands are made to access research data. In some cases, the subject of the litigation is tightly connected to the research questions, and litigants' interest in the data is not surprising. Researchers conducting studies on tobacco or occupational or other chemical exposures, for example, are relatively frequent targets of subpoenas. (shrink)

“Congealing” is a word that evokes senses of unpleasantness where perhaps something inviting had once been. It also implies that things are becoming less fluid and more rigid. As we began organizing ETHICOMP 2018, we wanted a theme that reflected the impact of technologies on human cultures, practices and lives. Our initial draft of the theme was “Creating, Changing, and Congealing Ways of Life with Technologies.” And while we were eventually persuaded to use a more congenial way of putting the (...) idea (it became “Creating, Changing, and Coalescing Ways of Life with Technologies”), in some ways, it remains true for us that “congealing,” and its connotations of something less pleasant, gets at the original idea. As we incorporate technologies into our practices, much attention is paid to how they change our ways of doing things. But technologies can also help ways of life set-up and harden like yesterday’s leftovers – not appealing, yet difficult to budge and sometimes quite unhealthy. Once a particular process is built around a piece of technology, it can become entrenched and increasingly difficult to change. For a historical example, consider how difficult it was to adapt records and software on the eve of the 21st century in response to the so-called “Y2K” problem. In early software development, efficient use of memory was an important design consideration. It had become a standard practice to use a 2-digit field for the year, which would roll to from “99” to “00” in the year 2000, causing problems for datedependent functions. Technologies can also reflect and reinforce existing cultural tendencies. For a recent example, consider the human resources software created by Amazon that used its existing hiring data to train a machine-learning system to rate applicants. The resulting system turned out to be biased against women applicants, downranking resumes that included the word “woman” or “women’s.” Amazon ended up scrapping the project altogether. Because of these kinds of effects, we wanted to encourage people to think beyond well-worn paradigms like “technologies are disruptive” to consider other kinds of effects they can have. As it happened, the imagery of “congealing” proved distasteful enough that the steering committee opted for a more neutral term. But even with the less-dramatic wording the conference ended up attracting a rich and diverse range of papers that examined technological issues from a variety of angles, exactly as we had hoped. (shrink)

To many who develop and use free software, the GNU General Public License represents an embodiment of the meaning of free software. In this paper we examine the definition and meaning of free software in the context of three events surrounding the GNU General Public License. We use a case involving the GPU software project to establish the importance of Freedom 0 in the meaning of free software. We analyze version 3 of the GNU General Public License and conclude that (...) although a credible case can be made that the added restrictions are consistent with the definition of free software, the case requires subtle arguments. Strong arguments against the added restrictions are less subtle, and may therefore be more convincing to many users and developers. We also analyze the Affero General Public License and conclude that it is inconsistent with the definition of free software. (shrink)

Human genomics is a translational field spanning research, clinical care, public health, and direct-to-consumer testing. However, law differs across these domains on issues including liability, consent, promoting quality of analysis and interpretation, and safeguarding privacy. Genomic activities crossing domains can thus encounter confusion and conflicts among these approaches. This paper suggests how to resolve these conflicts while protecting the rights and interests of individuals sequenced. Translational genomics requires this more translational approach to law.

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

The current explosion of genetic knowledge and the rapid proliferation of genetic tests has rightly provoked concern that we are approaching a future in which people will be labeled and disadvantaged based on genetic information. Indeed, some have already suffered harm, including denial of health insurance. This concern has prompted an outpouring of analysis. Yet almost all of it approaches the problem of genetic disadvantage under the rubric of “genetic discrimination.”This rubric is woefully inadequate to the task at hand. It (...) ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytic framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory.Indeed, there are multiple links among race, gender, and genetics. Dorothy Roberts has discussed the historical links between racism and genetics, while she and others have begun to map connections between gender and genetics. (shrink)