Medicine and Health Sciences Commons^™

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.

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 …

Systematic Review Of Smartphone-Based Passive Sensing For Health And Wellbeing., Victor P. Cornet Ms, Richard J. Holden

Health Services and Informatics Research

OBJECTIVE: To review published empirical literature on the use of smartphone-based passive sensing for health and wellbeing.

MATERIAL AND METHODS: A systematic review of the English language literature was performed following PRISMA guidelines. Papers indexed in computing, technology, and medical databases were included if they were empirical, focused on health and/or wellbeing, involved the collection of data via smartphones, and described the utilized technology as passive or requiring minimal user interaction.

RESULTS: Thirty-five papers were included in the review. Studies were performed around the world, with samples of up to 171 (median n = 15) representing individuals with bipolar disorder, …