[HTML][HTML] 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 …
[HTML][HTML] Best practices in nutrition science to earn and keep the public's trust
Public trust in nutrition science is the foundation on which nutrition and health progress is
based, including sound public health. An ASN-commissioned, independent Advisory …
based, including sound public health. An ASN-commissioned, independent Advisory …
[HTML][HTML] User experience, engagement, and popularity in mental health apps: secondary analysis of app analytics and expert app reviews
Background: User experience and engagement are critical elements of mental health apps'
abilities to support users. However, work examining the relationships among user …
abilities to support users. However, work examining the relationships among user …
[HTML][HTML] Motivations, concerns and preferences of personal genome sequencing research participants: baseline findings from the HealthSeq project
Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy
individuals. Understanding the motivations and concerns of research participants seeking …
individuals. Understanding the motivations and concerns of research participants seeking …
Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review
Aim: Introducing data sharing practices into the genomic research arena has challenged the
current mechanisms established to protect rights of individuals and triggered policy …
current mechanisms established to protect rights of individuals and triggered policy …
[HTML][HTML] Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research
S Dheensa, A Fenwick, S Shkedi-Rafid, G Crawford… - Genetics in …, 2016 - Elsevier
Purpose The extent of the responsibility of health-care professionals (HCPs) to ensure that
patients' relatives are told of their risk is unclear. Current international guidelines take …
patients' relatives are told of their risk is unclear. Current international guidelines take …
De-identified genomic data sharing: the research participant perspective
D Goodman, CO Johnson, D Bowen, M Smith… - Journal of community …, 2017 - Springer
Combining datasets into larger and separate datasets is becoming increasingly common,
and personal identifiers are often removed in order to maintain participant anonymity. Views …
and personal identifiers are often removed in order to maintain participant anonymity. Views …
[HTML][HTML] Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review
Background: Secondary use of health data has reached unequaled potential to improve
health systems governance, knowledge, and clinical care. Transparency regarding this …
health systems governance, knowledge, and clinical care. Transparency regarding this …
[HTML][HTML] Attitudes of blood donors to their sample and data donation for biobanking
V Raivola, K Snell, I Helén, J Partanen - European Journal of Human …, 2019 - nature.com
Modern biomedical and genetic studies require large study cohorts; blood donors have
been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood …
been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood …