This opinion piece, written by Adam Miner, instructor in the psychiatry and behavioral sciences, and Steven Asch, professor of medicine, discusses home-based digital assistants and data sharing for sensitive disclosures.
Users have to make decisions concerning the disclosure of their personal information on the basis of a difficult tradeoff between data protection and the advantages stemming from data sharing.
Item 29: Statement of who will have access to the final trial dataset, and disclosure of contractual agreements that limit such access for investigators The Data Management Coordinating Center will oversee the intra-study data sharing process, with input from the Data Management Subcommittee.
This number is comparable to ours when one considers that the pharmacy file disclosure required a data sharing agreement and regular audits of the data recipients.
COPPA is designed to put forward a standard level of disclosure and data protection.
Appropriate non-disclosure and data use agreements (DUA) are therefore required.
Tribal stakeholders expressed tremendous concerns related to data sharing and the disclosure of policy details to anyone outside of the immediate planning group; these concerns speak to the longstanding mistrust of researchers, particularly non-Native researchers, that exists in many Native communities.
Such ELSI research could include: Issues of informed consent, data sharing, identifiability and disclosure of secondary/incidental findings in WGES studies in contrast to GWAS or candidate gene studies in Africa.
In theory, study data can be anonymised and made suitable for data sharing; however, this has proved highly challenging in practice and risks of disclosure remain in many datasets.
While the new proposals concentrate on information sharing, faster breach disclosure policies and data privacy protection, it muddies the waters for security researchers who help us find new vulnerabilities.
