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  1. Awareness, experiences and perceptions regarding genetic testing and the return of genetic and genomics results in a hypothetical research context among patients in Uganda: a qualitative study.Joseph Ochieng, Betty Kwagala, John Barugahare, Marlo Möller & Keymanthri Moodley - forthcoming - Journal of Medical Ethics.
    BackgroundGenetic testing presents unique ethical challenges for research and clinical practice, particularly in low-resource settings. To address such challenges, context-specific understanding of ethical, legal and social issues is essential. Return of genetics and genomics research (GGR) results remains an unresolved yet topical issue particularly in African settings that lack appropriate regulation and guidelines. Despite the need to understand what is contextually acceptable, there is a paucity of empirical research and literature on what constitutes appropriate practice with respect to GGR.The study (...)
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  • Protecting Posted Genes: Social Networking and the Limits of GINA.Sandra Soo-Jin Lee & Emily Borgelt - 2014 - American Journal of Bioethics 14 (11):32-44.
    The combination of decreased genotyping costs and prolific social media use is fueling a personal genetic testing industry in which consumers purchase and interact with genetic risk information online. Consumers and their genetic risk profiles are protected in some respects by the 2008 federal Genetic Information Nondiscrimination Act (GINA), which forbids the discriminatory use of genetic information by employers and health insurers; however, practical and technical limitations undermine its enforceability, given the everyday practices of online social networking and its impact (...)
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  • Social Networking and Personal Genomics: Suggestions for Optimizing the Interaction.Dov Greenbaum & Mark Gerstein - 2009 - American Journal of Bioethics 9 (6-7):15-19.
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  • How anonymous is 'anonymous'? Some suggestions towards a coherent universal coding system for genetic samples.Harald Schmidt & Shawneequa Callier - 2012 - Journal of Medical Ethics 38 (5):304-309.
    So-called ‘anonymous’ tissue samples are widely used in research. Because they lack externally identifying information, they are viewed as useful in reconciling conflicts between the control, privacy and confidentiality interests of those from whom the samples originated and the public (or commercial) interest in carrying out research, as reflected in ‘consent or anonymise’ policies. High level guidance documents suggest that withdrawal of consent and samples and the provision of feedback are impossible in the case of anonymous samples. In view of (...)
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  • Caught you: threats to confidentiality due to the public release of large-scale genetic data sets. [REVIEW]Matthias Wjst - 2010 - BMC Medical Ethics 11 (1):1-4.
    BackgroundLarge-scale genetic data sets are frequently shared with other research groups and even released on the Internet to allow for secondary analysis. Study participants are usually not informed about such data sharing because data sets are assumed to be anonymous after stripping off personal identifiers.DiscussionThe assumption of anonymity of genetic data sets, however, is tenuous because genetic data are intrinsically self-identifying. Two types of re-identification are possible: the "Netflix" type and the "profiling" type. The "Netflix" type needs another small genetic (...)
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