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1.
Maya Mayblin 《Ethnos》2014,79(3):342-364
There is no such thing as an accidental sacrifice. Sacrifice is always pre-meditated, and if not entirely goal-oriented, at the very least inherently meaningful as a process in itself. This paper is about how we might begin to understand sacrifices that do not conform to these rules. It concerns the question: does sacrifice exist outside of its (often) dramatic, self-conscious elaboration? Within the Brazilian Catholic tradition everyday life – ideally characterised by monotonous, undramatic, acts of self-giving – is ‘true sacrifice’. For ordinary Catholics, the challenge is not how to self-sacrifice, but how to make one's mundane life of self-sacrifice visible whilst keeping one's gift of suffering ‘free’. In this paper I describe, ethnographically, the work entailed as one of ‘revelation’ and use the problems thrown up to reflect upon both the limits and advantages of Western philosophical versus anthropological understandings of Christian sacrificial practices to date. 相似文献
2.
Predictive genetic testing may confront those affected with difficult life situations that they have not experienced before. These life situations may be interpreted as ‘absurd’. In this paper we present a case study of a predictive test situation, showing the perspective of a woman going through the process of deciding for or against taking the test, and struggling with feelings of alienation. To interpret her experiences, we refer to the concept of absurdity, developed by the French Philosopher Albert Camus. Camus' writings on absurdity appear to resonate with patients' stories when they talk about their body and experiences of illness. In this paper we draw on Camus' philosophical essay ‘The Myth of Sisyphus’ (1942), and compare the absurd experiences of Sisyphus with the interviewee's story. This comparison opens up a field of ethical reflection. We demonstrate that Camus' concept of absurdity offers a new and promising approach to understanding the fragility of patients' situations, especially in the field of predictive testing. We show that people affected might find new meaning through narratives that help them to reconstruct the absurd without totally overcoming it. In conclusion, we will draw out some normative consequences of our narrative approach. 相似文献
3.
In Western countries a considerable number of older people move to a residential home when their health declines. Institutionalization often results in increased dependence, inactivity and loss of identity or self-worth (dignity). This raises the moral question as to how older, institutionalized people can remain autonomous as far as continuing to live in line with their own values is concerned. Following Walker's meta-ethical framework on the assignment of responsibilities, we suggest that instead of directing all older people towards more autonomy in terms of independence, professional caregivers should listen to the life narrative of older people and attempt to find out how their personal identity, relations and values in life can be continued in the new setting. If mutual normative expectations between caregivers and older people are not carefully negotiated, it creates tension. This tension is illustrated by the narrative of Mr Powell, a retired successful public servant now living in a residential home. The narrative describes his current life, his need for help, his independent frame of mind, and his encounters with institutional and professional policies. Mr Powell sees himself as a man who has always cared for himself and others, and who still feels that he has to fulfil certain duties in life. Mr Powell's story shows that he is not always understood well by caregivers who respond from a one-sided view of autonomy as independence. This leads to misunderstanding and an underestimation of his need to be noticed and involved in the residential community. 相似文献
4.
Colin Scott 《Ethnos》2013,78(1):51-66
The multi-vocality of the black bear as a categoryin Cree hunting entails a melding of practical-empiricalrationality with ethicaland ‘spiritual’ understandings. On one level of attention in the hunter's world, the bear functions as a postulate in indigenous scientific ecology. It does so by assimilating the consequences of both efficiency and restraint in hunting, as hunters strive to maintain good relationships with others in the world (summarized and abstracted in the bear). At the same time, reflection on these issues via the bear as a spiritual ‘alter-’ endows hunters with profound senses of identity, value and personal meaning, so that action in the world is at once practical, social, ethical, and self-motivated. This outcome is a combination of cultural learning and life experience. As the weft of experience entwines the warp of culturally available categories, narrative is the weaver. 相似文献
5.
Norman P. Lewis Debbie Treise Stephen I. Hsu William L. Allen Hannah Kang 《New genetics and society》2013,32(4):291-307
In 2007, the American Society of Human Genetics issued recommendations for what the new and largely self-regulating industry offering genetic tests directly to consumers should disclose to potential customers. Websites for every DTC company offering health-related genetic tests as identified by a public policy group were evaluated for compliance with those transparency recommendations. The results showed that only six of the 25 companies studied met even 70% of the standards and that overall, the industry complied with the disclosure standards just 44% of the time. Further, the study revealed that even when companies met the letter of the law, they often failed to disclose to consumers the shortcomings associated with the tests and thus promoted genetic determinism. By failing to meet the spirit of the ASHG transparency recommendations, the DTC genetic testing industry demonstrates disdain toward the ethical principle of informed consent. 相似文献
6.
MELISSA SEYMOUR FAHMY 《Bioethics》2011,25(3):128-136
This paper demonstrates that accounting for the moral harm of selecting for deafness is not as simple or obvious as the widespread negative response from the hearing community would suggest. The central questions addressed by the paper are whether our moral disquiet with regard to selecting for deafness can be adequately defended, and if so, what this might entail. The paper considers several different strategies for accounting for the supposed moral harm of selecting for deafness and concludes that the deaf case cannot be treated in isolation. Accounting for the moral harm of selecting for deafness necessarily entails moral implications for other cases of procreation and procreative decision‐making, including unassisted coital reproduction. The lesson to be learned from the deaf case is that we need norms that govern not just the use of reproductive technology, but procreation and procreative decision‐making in all of its various forms. 相似文献
7.
Despite a growing personal genomics market, little is known about how people engage with the possibilities offered by direct-to-consumer (DTC) genetic testing. In order to help address this gap, this study deploys narrative analysis of YouTube videos posted by individuals who have purchased DTC genetic testing for disease. Genetic testing is said to be contributing to new states of illness, where individuals may become “patients-in-waiting.” In the videos analyzed, we found a new form of storytelling about this ambiguous state of illness, which we refer to as autobiology. Autobiology – the study of, and story about, one's own biology – concerns narratives of sense-making through forms of biological practice, as well as wayfaring narratives which interweave genetic markers and family histories of disease. These autobiologies – part of a broader shift toward public stories about genetics and other healthcare technologies – exhibit playfulness, as well as being bound with consumerist practices. 相似文献
8.
R. S. Balgir 《American journal of physical anthropology》1984,65(2):199-200
Modal types of palmar C- and D-line terminations of 60 couples of Sikligars from Chandigarh have been evaluated and compared with the populations from Northwestern India. The distribution of palmar C- and D-line terminations among the Sikligars resembles those of the Rajputs and Hindu Gujjars, suggesting a common population origin, an infrequent inflow of genes from the surrounding populations, and their biosocial isolation. Bilateral distribution asymmetry and sexual dimorphism were also observed. 相似文献
9.
Amy L. Fletcher 《New genetics and society》2013,32(1):3-14
This case study of the Estonian Genome Project (EGP) analyses the Estonian policy decision to construct a national human gene bank. Drawing upon qualitative data from newspaper articles and public policy documents, it focuses on how proponents use discourse to link the EGP to the broader political goal of securing Estonia's position within the Western/European scientific and cultural space. This dominant narrative is then situated within the analytical notion of the “brand state”, which raises potentially negative political consequences for this type of market‐driven genomic research. Considered against the increasing number of countries engaging in gene bank and/or gene database projects, this analysis of Estonia elucidates issues that cross national boundaries, while also illuminating factors specific to this small, post‐Soviet state as it enters the global biocybernetic economy. 相似文献
10.
MICHAEL N. MAUTNER 《Bioethics》2009,23(8):433-440
In the future, human destiny may depend on our ethics. In particular, biotechnology and expansion in space can transform life, raising profound questions. Guidance may be found in Life‐centered ethics, as biotic ethics that value the basic patterns of organic gene/protein life, and as panbiotic ethics that always seek to expand life. These life‐centered principles can be based on scientific insights into the unique place of life in nature, and the biological unity of all life. Belonging to life then implies a human purpose: to safeguard and propagate life. Expansion in space will advance this purpose but will also raise basic questions. Should we expand all life or only intelligent life? Should we aim to create populations of trillions? Should we seed other solar systems? How far can we change but still preserve the human species, and life itself? The future of all life may be in our hands, and it can depend on our guiding ethics whether life will fulfil its full potentials. Given such profound powers, life‐centered ethics can best secure future generations. Our descendants may then understand nature more deeply, and seek to extend life indefinitely. In that future, our human existence can find a cosmic purpose. 相似文献
11.
Genetic research presents ethical challenges to the achievement of valid informed consent, especially in developing countries with areas of low literacy. During the last several years, a number of genetic research proposals involving Omani nationals were submitted to the Department of Research and Studies, Ministry of Health, Oman. The objective of this paper is to report on the results of an internal quality assurance initiative to determine the extent of the information being provided in genetic research informed consent forms. In order to achieve this, we developed checklists to assess the inclusion of basic elements of informed consent as well as elements related to the collection and future storage of biological samples. Three of the authors independently evaluated and reached consensus on seven informed consent forms that were available for review. Of the seven consent forms, four had less than half of the basic elements of informed consent. None contained any information regarding whether genetic information relevant to health would be disclosed, whether participants may share in commercial products, the extent of confidentiality protections, and the inclusion of additional consent forms for future storage and use of tissue samples. Information regarding genetic risks and withdrawal of samples were rarely mentioned (1/7), whereas limits on future use of samples were mentioned in 3 of 7 consent forms. Ultimately, consent forms are not likely to address key issues regarding genetic research that have been recommended by research ethics guidelines. We recommend enhanced educational efforts to increase awareness, on the part of researchers, of information that should be included in consent forms. 相似文献
12.
Mackenzie C 《Bioethics》2007,21(9):515-516
A brief discussion of how relational autonomy, phenomenological theories of embodiment and narrative approaches to clinical ethics can open up the space for more subtle feminist ethical reflection about genetic termination. 相似文献
13.
14.
Deborah A. Sampson Dennis Caldwell Andre D. Taylor Jacquelyn Y. Taylor 《The Yale journal of biology and medicine》2013,86(1):89-98
In this paper, we examine the implementation and difficulties when conductinggenetics research in a rural, traditional West African culture within the frameof the United States’ grounded research ethics. Research challenges arehighlighted by Western researchers following U.S. Institutional Review Board(IRB) guidelines and practices in a non-Western country. IRB concepts areculture bound in Western ideals that may not have synchronicity andcompatibility with non-Western cultures. Differences in sociocultural norms,traditions, language, and geography were influencing factors that can affectapplication of IRB principles. Suggestions for change are offered, which willpotentially aid researchers considering application of IRB requirements whenconducting research in non-Westernized, non-industrialized countries. 相似文献
15.
Williams SR 《Culture, medicine and psychiatry》2005,29(2):225-252
In 1998, Foster and colleagues published the results of a genetic study intended to test whether Thomas Jefferson could have
fathered any of Sally Hemings' children. They found that the Jefferson Y chromosome haplotype matched that of a descendant
of Hemings' youngest child, but not that of the descendants of the eldest son, Thomas Woodson. The Woodson descendants were
shocked by the study's finding, which disagreed with their family oral history. They were suspicious of the study conclusions
because of the methods used in recruiting participants for the study and the manner in which they learned of the results.
The Woodsons' experience as participants in one of the first examples of genetic genealogy illustrates several issues that
both geneticists and amateur genetic genealogists will face in studies of this kind. Misperceptions about the relationship
between biology and race, and group genetics in general, can make the interpretation of genetic data difficult. Continuing
collaborations between the media and the scientific community will help the public to better understand the risks as well
as the benefits of genetic genealogy. Researchers must decide prior to beginning their research what role the human subjects
will play in the study and when they will be notified of the study's conclusions. Amateur genetic genealogists should anticipate
unexpected outcomes, such as the identification of nonpaternity, to minimize any harmful effects to study participants. Although
modern genetic methods provide a powerful new tool for genealogical study, they cannot resolve all genealogical issues, as
this study shows, and can involve unanticipated risks to the participants. 相似文献
16.
JANET MALEK 《Bioethics》2013,27(2):59-64
A number of authors have objected to potential parents' use of reproductive genetic technologies on the grounds that the use of these technologies reflects a morally problematic attitude toward parenting. More specifically, proponents of this view have argued that such a choice is inconsistent with the unconditional acceptance that lies at the heart of praiseworthy parental attitudes. This paper offers a rebuttal of this view by arguing that it is possible for a parent to exhibit unconditional acceptance of the child herself without accepting each of that child's traits. If this is true, the use of reproductive genetic technologies does not inherently undermine appropriate parental attitudes. Further, by working to change some of a child's specific traits, a parent may instead exemplify an aspirational aspect of praiseworthy parenting and so demonstrate appropriate parental attitudes. 相似文献
17.
ROBERT SPARROW 《Bioethics》2006,20(6):308-318
In this paper I examine what I take to be the best case for reproductive human cloning, as a medical procedure designed to overcome infertility, and argue that it founders on an irresolvable tension in the attitude towards the importance of being ‘genetically related’ to our children implied in the desire to clone. Except in the case where couples are cloning a child they have previously conceived naturally, cloning is unable to establish the right sort of genetic relation to make couples the parents of their cloned child. If anybody is the genetic parent of a cloned child it is the natural parent(s) of the DNA donor. Paradoxically, in order to resist the claims of the parents of the donor to the cloned child, the argument for human reproductive cloning must place more weight on the intention to parent a child, than we do in cases of ordinary reproduction. It must insist that the parental relation is established by the intentions of the couple who bring a clone into the world and not by their genetic relation to the child. The emphasis placed on intention as establishing the parental relationship works to undermine the justification for cloning in the first place. For cloning to play a useful role as a reproductive technology, it must allow couples to become parents who could do so no other way. However, to the extent that intention is sufficient to establish parenthood, adoption or surrogacy, which are existing alternatives to cloning, will serve equally well to allow couples to become parents. 相似文献
18.
The ‘Genetic engineering and the intrinsic value and integrity of animals and plants’ meeting, was organised by IfGene and held in Edinburgh, Scotland 18–21 September 2002. 相似文献
19.
Daniel Edward Callies 《Bioethics》2019,33(9):1091-1097
Gene drive technology has immense potential. The ability to bypass the laws of Mendelian inheritance and almost ensure the transmission of specific genetic material to future generations creates boundless possibilities. But alongside these boundless possibilities are major social and ethical issues. This article aims to introduce gene drive technology, some of its potential applications, and some of the social and ethical issues that arise during research into the technology. For example, is investigation into gene drives hubristic? Would applications of gene drives count as technological fixes? Or does research into such a technology sit on a slippery slope or lock us in to its full‐scale use? Are there perverse effects of engaging in research, and, most importantly, who ought to be included in the decision‐making process regarding research and field trials? Understanding the basic ethical landscape of this technology will prove invaluable to the public, scientists, and policy‐makers as research moves forward. 相似文献
20.
Timothy F. Murphy 《Bioethics》2014,28(7):335-342
Jürgen Habermas has argued against prenatal genetic interventions used to influence traits on the grounds that only biogenetic contingency in the conception of children preserves the conditions that make the presumption of moral equality possible. This argument fails for a number of reasons. The contingency that Habermas points to as the condition of moral equality is an artifact of evolutionary contingency and not inviolable in itself. Moreover, as a precedent for genetic interventions, parents and society already affect children's traits, which is to say there is moral precedent for influencing the traits of descendants. A veil‐of‐ignorance methodology can also be used to justify prenatal interventions through its method of advance consent and its preservation of the contingency of human identities in a moral sense. In any case, the selection of children's traits does not undermine the prospects of authoring a life since their future remains just as contingent morally as if no trait had been selected. Ironically, the prospect of preserving human beings as they are – to counteract genetic drift – might even require interventions to preserve the ability to author a life in a moral sense. In light of these analyses, Habermas' concerns about prenatal genetic interventions cannot succeed as objections to their practice as a matter of principle; the merits of these interventions must be evaluated individually. 相似文献