The tension between data sharing and the protection of privacy in genomics research
J Kaye - Annual review of genomics and human genetics, 2012 - annualreviews.org
Next-generation sequencing and global data sharing challenge many of the governance
mechanisms currently in place to protect the privacy of research participants. These …
mechanisms currently in place to protect the privacy of research participants. These …
Sampling populations of humans across the world: ELSI issues
BM Knoppers, MH Zawati… - Annual review of genomics …, 2012 - annualreviews.org
There are an increasing number of population studies collecting data and samples to
illuminate gene-environment contributions to disease risk and health. The rising affordability …
illuminate gene-environment contributions to disease risk and health. The rising affordability …
Dwarna: a blockchain solution for dynamic consent in biobanking
Dynamic consent aims to empower research partners and facilitate active participation in the
research process. Used within the context of biobanking, it gives individuals access to …
research process. Used within the context of biobanking, it gives individuals access to …
Towards a data sharing Code of Conduct for international genomic research
BM Knoppers, JR Harris, AM Tassé, I Budin-Ljøsne… - Genome medicine, 2011 - Springer
Data sharing is increasingly regarded as an ethical and scientific imperative that advances
knowledge and thereby respects the contributions of the participants. Because of this and …
knowledge and thereby respects the contributions of the participants. Because of this and …
Biobanks, data sharing, and the drive for a global privacy governance framework
ES Dove - Journal of Law, Medicine & Ethics, 2015 - cambridge.org
Spurred by a confluence of factors, most notably the decreasing cost of high-throughput
technologies and advances in information technologies, a number of population research …
technologies and advances in information technologies, a number of population research …
A deliberative study of public attitudes towards sharing genomic data within NHS genomic medicine services in England
L Hassan, A Dalton, C Hammond… - Public Understanding …, 2020 - journals.sagepub.com
Whole genome (DNA) sequencing is becoming part of routine care healthcare in England.
Genomic data are most useful when pooled with other patients' data, meaning that clinicians …
Genomic data are most useful when pooled with other patients' data, meaning that clinicians …
Reflexive governance in biobanking: on the value of policy led approaches and the need to recognise the limits of law
G Laurie - Human genetics, 2011 - Springer
Although a few jurisdictions around the world have legislated in response to the
phenomenon of biobanking, the far more common response has been policy led with …
phenomenon of biobanking, the far more common response has been policy led with …
Public interest, health research and data protection law: establishing a legitimate trade-off between individual control and research access to health data
The United Kingdom's Data Protection Act 2018 introduces a new public interest test
applicable to the research processing of personal health data. The need for interpretation …
applicable to the research processing of personal health data. The need for interpretation …
[图书][B] The connected self: the ethics and governance of the genetic individual
H Widdows - 2013 - books.google.com
Currently, the ethics infrastructure–from medical and scientific training to the scrutiny of
ethics committees–focuses on trying to reform informed consent to do a job which it is simply …
ethics committees–focuses on trying to reform informed consent to do a job which it is simply …
Public interest in health data research: laying out the conceptual groundwork
A Ballantyne, GO Schaefer - Journal of medical ethics, 2020 - jme.bmj.com
The future of health research will be characterised by three continuing trends: rising demand
for health data; increasing impracticability of obtaining specific consent for secondary …
for health data; increasing impracticability of obtaining specific consent for secondary …