From genetic privacy to open consent

JE Lunshof, R Chadwick, DB Vorhaus… - Nature Reviews …, 2008 - nature.com
Recent advances in high-throughput genomic technologies are showing concrete results in
the form of an increasing number of genome-wide association studies and in the publication …

Cancer survivorship—genetic susceptibility and second primary cancers: research strategies and recommendations

LB Travis, CS Rabkin, LM Brown… - Journal of the …, 2006 - academic.oup.com
Abstract Cancer survivors constitute 3.5% of the United States population, but second
primary malignancies among this high-risk group now account for 16% of all cancer …

[HTML][HTML] Medicine 2.0: social networking, collaboration, participation, apomediation, and openness

G Eysenbach - Journal of medical Internet research, 2008 - jmir.org
In a very significant development for eHealth, a broad adoption of Web 2.0 technologies and
approaches coincides with the more recent emergence of Personal Health Application …

Reworking qualitative data

J Heaton - 2004 - torrossa.com
To be sure, secondary analysis is not limited to quantitative data. Observation notes,
unstructured interviews and documents can also be usefully reanalyzed. In fact, some field …

[HTML][HTML] The emergence of national electronic health record architectures in the United States and Australia: models, costs, and questions

TD Gunter, NP Terry - Journal of medical Internet research, 2005 - jmir.org
Emerging electronic health record models present numerous challenges to health care
systems, physicians, and regulators. This article provides explanation of some of the …

Views on health information sharing and privacy from primary care practices using electronic medical records

G Perera, A Holbrook, L Thabane, G Foster… - International journal of …, 2011 - Elsevier
OBJECTIVE: To determine how patients and physicians balance the perceived benefits and
harms of sharing electronic health data for patient care and for secondary purposes …

Recruiting patients to medical research: double blind randomised trial of “opt-in” versus “opt-out” strategies

C Junghans, G Feder, H Hemingway, A Timmis… - Bmj, 2005 - bmj.com
Objective To evaluate the effect of opt-in compared with opt-out recruitment strategies on
response rate and selection bias. Design Double blind randomised controlled trial. Setting …

Genomic research and wide data sharing: views of prospective participants

SB Trinidad, SM Fullerton, JM Bares, GP Jarvik… - Genetics in …, 2010 - nature.com
Purpose: Sharing study data within the research community generates tension between two
important goods: promoting scientific goals and protecting the privacy interests of study …

Comparison of consumers' views on electronic data sharing for healthcare and research

KK Kim, JG Joseph… - Journal of the American …, 2015 - academic.oup.com
New models of healthcare delivery such as accountable care organizations and patient-
centered medical homes seek to improve quality, access, and cost. They rely on a robust …

Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study

C Papoutsi, JE Reed, C Marston, R Lewis… - BMC medical informatics …, 2015 - Springer
Background Although policy discourses frame integrated Electronic Health Records (EHRs)
as essential for contemporary healthcare systems, increased information sharing often …