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Public health agencies regularly survey randomly selected anonymous students to track drug use, sexual activities, and other risk behaviors. Students are unidentifiable, but a recent project that i... | |
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. | |
Participant-driven research is a burgeoning domain of research innovation, often facilitated by mobile technologies. Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovation, including in return of results. | |
When considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests. | |
Volume 20, Issue 10, October 2020, Page W4-W7. | |
Newborn screening is a publicly funded test aimed at identifying genetic diseases in healthy infants where early diagnosis can lead to timely and effective clinical intervention. Recently, there has been growing interest in applying genomic sequencing, in particular Whole Genome Sequencing and Whole Exome Sequencing, to this screening, significantly increasing the number of identifiable conditions. Considering the promises of this approach and the specificity of genomic data, some have suggested that newborn sequencing could serve the interests of not only screened (...) newborns but also their parents, relatives, and even society. Determining which interests should legitimately be considered in genomic newborn sequencing is crucial for defining which genes to include in the gene panel of neonatal genomic screening. Stemming from a bioethical perspective, this paper discusses which interests should be considered in newborn sequencing, what the implications are for gene panel definition, and what conflicts between interests might emerge. Specifically, the newborn clinical interest, the reproductive interest, the family clinical interest, personal utility, and social utility will be considered. (shrink) | |
Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States. | |
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