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A Systematic Literature Review Of Individuals' Perspectives On Privacy And Genetic Information In The United States, Ellen W. Clayton, Colin M. Halverson, Nila A. Sathe, Bradley A. Malin
A Systematic Literature Review Of Individuals' Perspectives On Privacy And Genetic Information In The United States, Ellen W. Clayton, Colin M. Halverson, Nila A. Sathe, Bradley A. Malin
Vanderbilt Law School Faculty Publications
Concerns about genetic privacy affect individuals' willingness to accept genetic testing in clinical care and to participate in genomics research. To learn what is already known about these views, we conducted a systematic review, which ultimately analyzed 53 studies involving the perspectives of 47,974 participants on real or hypothetical privacy issues related to human genetic data. Bibliographic databases included MEDLINE, Web of Knowledge, and Sociological Abstracts. Three investigators independently screened studies against predetermined criteria and assessed risk of bias. The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. When asked specifically …
The Ethics In Synthetics: Statistics In The Service Of Ethics And Law In Health-Related Research In Big Data From Multiple Sources, Sharon Bassan Ph.D., Ofer Harel Ph.D.
The Ethics In Synthetics: Statistics In The Service Of Ethics And Law In Health-Related Research In Big Data From Multiple Sources, Sharon Bassan Ph.D., Ofer Harel Ph.D.
Journal of Law and Health
An ethical advancement of scientific knowledge demands a delicate equilibrium between benefits and harms, in particular in health-related research. When applying and advancing scientific knowledge or technologies, Article 4 of UNESCO’s Universal Declaration on Bioethics and Human Rights, ethically justifiable research requires maximizing direct and indirect benefits and minimizing possible harms. The National Institution of Health [NIH] Data Sharing Policy and Implementation Guidance similarly states that data necessary for drawing valid conclusions and advancing medical research should be made as widely and freely available as possible (in order to share the benefits) while safeguarding the privacy of participants from potentially …