Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence
Introduction International sharing of health data opens the door to the study of the so-called
'Big Data', which holds great promise for improving patient-centred care. Failure of recent …
'Big Data', which holds great promise for improving patient-centred care. Failure of recent …
Molecular genetic testing and the future of clinical genomics
SH Katsanis, N Katsanis - Nature Reviews Genetics, 2013 - nature.com
Genomic technologies are reaching the point of being able to detect genetic variation in
patients at high accuracy and reduced cost, offering the promise of fundamentally altering …
patients at high accuracy and reduced cost, offering the promise of fundamentally altering …
Beyond consent: building trusting relationships with diverse populations in precision medicine research
With the growth of precision medicine research on health data and biospecimens, research
institutions will need to build and maintain long-term, trusting relationships with patient …
institutions will need to build and maintain long-term, trusting relationships with patient …
[PDF][PDF] Public attitudes toward consent and data sharing in biobank research: a large multi-site experimental survey in the US
SC Sanderson, KB Brothers, ND Mercaldo… - The American Journal of …, 2017 - cell.com
Individuals participating in biobanks and other large research projects are increasingly
asked to provide broad consent for open-ended research use and widespread sharing of …
asked to provide broad consent for open-ended research use and widespread sharing of …
[图书][B] The ethics of research with human subjects: Protecting people, advancing science, promoting trust
DB Resnik - 2018 - Springer
Research with human subjects 1 exemplifies the perennial conflict between the good of the
individual and the good of society. Policies and procedures that protect the rights and …
individual and the good of society. Policies and procedures that protect the rights and …
The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies
Abstract Introduction The eMERGE (electronic MEdical Records and GEnomics) Network is
an NHGRI-supported consortium of five institutions to explore the utility of DNA repositories …
an NHGRI-supported consortium of five institutions to explore the utility of DNA repositories …
A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States
NA Garrison, NA Sathe, AHM Antommaria… - Genetics in …, 2016 - nature.com
Purpose: In 2011, an Advanced Notice of Proposed Rulemaking proposed that de-identified
human data and specimens be included in biobanks only if patients provide consent. The …
human data and specimens be included in biobanks only if patients provide consent. The …
Information security systems and methods
WK CAREY, J Nilsson - US Patent 9,589,110, 2017 - Google Patents
US9589110B2 - Information security systems and methods - Google Patents US9589110B2 -
Information security systems and methods - Google Patents Information security systems and …
Information security systems and methods - Google Patents Information security systems and …
A systematic literature review of individuals' perspectives on privacy and genetic information in the United States
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 …
clinical care and to participate in genomics research. To learn what is already known about …
Building the partners healthcare biobank at partners personalized medicine: informed consent, return of research results, recruitment lessons and operational …
EW Karlson, NT Boutin, AG Hoffnagle… - Journal of personalized …, 2016 - mdpi.com
The Partners HealthCare Biobank is a Partners HealthCare enterprise-wide initiative whose
goal is to provide a foundation for the next generation of translational research studies of …
goal is to provide a foundation for the next generation of translational research studies of …