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Everyone knows that something has gone wrong, in the United States, with the conventions of privacy. Along with a vastly increased tolerance for variation in sexual life we have seen a sharp increase in prurient and censorious attention to the sexual lives of public figures and famous persons, past and present. The culture seems to be growing more tolerant and more intolerant at the same time, though perhaps different parts of it are involved in the two movements. |
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From the Supreme Court to the bedroom, privacy is an intensely contested interest in our everyday lives and privacy law. Some people appeal to privacy to protect such critical areas as abortion, sexuality, and personal information. Yet, privacy skeptics argue that there is no such thing as a right to privacy. I argue that we cannot abandon the concept of privacy. If we wish to avoid extending this elusive concept to cover too much of our lives or shrinking it to (...) |
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Objective To determine the attitudes of Egyptian patients regarding their participation in research and with the collection, storage and future use of blood samples for research purposes. Design Cross-sectional survey. Study population Adult Egyptian patients (n=600) at rural and urban hospitals and clinics. Results Less than half of the study population (44.3%) felt that informed consent forms should provide research participants the option to have their blood samples stored for future research. Of these participants, 39.9% thought that consent forms should (...) |
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Biobanks are precariously situated at the intersection of science, genetics, genomics, society, ethics, the law and politics. This multi-disciplinarity has given rise to a new discourse in health research involving diverse stakeholders. Each stakeholder is embedded in a unique context and articulates his/her biobanking activities differently. To researchers, biobanks carry enormous transformative potential in terms of advancing scientific discovery and knowledge. However, in the context of power asymmetries in Africa and a distrust in science born out of historical exploitation, researchers (...) |
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The creation of biobanks depends upon people’s willingness to donate their samples for research purposes and to agree to sample storage. Moreover, biobanks are a public good that requires active participation by all interested stakeholders at every stage of development. Therefore, knowing public’s attitudes towards participation in a biobank and biobank management is important and deserves investigation. |
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Biobanking is a relatively new concept in Egypt. Building a good relationship with different stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is necessary to assess the attitude of different groups towards this concept. The objective of this work is to assess the knowledge, attitude, and opinions of Egyptian patients towards biobanking issues. We designed a structured survey to be administered to patients coming to the outpatient clinics in 3 university hospitals in Egypt. The (...) |
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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. (...) |
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In this essay, I argue that the way American bioethics has traditionally conceived of the distinction between public and private has given rise to some ethically problematic blind spots in its analyses to date. Furthermore, I argue that bioethics's view of the public and private spheres has reinforced a shortsighted view of bioethics's analytical sphere of influence. In particular, it has led bioethics to conceptualize issues largely from the perspective of health professionals, eschewing analyses of the problems of health and (...) |
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Background: The banking of biological samples raises a number of ethical issues in relation to the storage,export and re-use of samples. Whilst there is a growing body of literature exploringparticipant perspectives in North America and Europe, hardly any studies have been reportedin Africa. This is problematic in particular in light of the growing amount of research takingplace in Africa, and with the rise of biobanking practices also on the African continent. Inorder to investigate the perspectives of African research participants, we (...) |
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The philosopher Henry Richardson's short book is a defense of a position on a neglected topic in medical research ethics. Clinical research ethics has been a longstanding area of study, dating back to the aftermath of the Nazi death-camp doctors and the Tuskegee syphilis study. Most ethical regulations and institutions have developed in response to those past abuses, including the stress on obtaining informed consent from the subject. Richardson points out that that these ethical regulations do not address one of (...) |
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