Big Data and Privacy Rights
By Xavier Symons,
BioEdge
| 02. 07. 2015
Untitled Document
A Nuffield Council review of the British Government’s ‘care.data’ scheme has found that the existing privacy framework needs major revision.
According to the review -- the findings of which were released earlier this week -- public participation should be at the heart of big data projects in health care and biomedical research.
The report considers issues of privacy and public interest and how developments in data science have put considerable pressure on conventional means of protecting privacy (including privacy rights, data protection and duties of confidence). It concludes that good governance that involves public participation and accountability is essential to maintain public trust.
Some of the more striking recommendations include:
- The UK Government should introduce robust penalties, including imprisonment, for the deliberate misuse of data, whether or not it results in demonstrable harm to individuals.
- There should be complete audit trails of everyone who has been given access to NHS data, and the purposes to which they have been put.
- An independent, broadly representative group of participants should be convened to develop a public statement about how data...
Related Articles
By Megan Molteni and Anil Oza, STAT | 10.07.2025
For two years, a panel of scientific experts, clinicians, and patient advocates had been hammering out ways to increase community engagement in National Institutes of Health-funded science. When they presented their road map to the NIH Director Jay Bhattacharya last...
Paula Amato & Shoukhrat Mitalipov
[OHSU News/Christine Torres Hicks]
On September 30th, a team of 21 scientists from Oregon Health & Science University (OHSU) published a significant paper in Nature Communications, with a scientifically accurate but, to many, somewhat abstruse headline:
Induction of experimental cell division to generate cells with reduced chromosome ploidy
The lead authors were Shoukhrat Mitalipov, recently described here as “a push-the-envelope biologist,” and his long-term colleague Paula Amato. (Recall that in July the pair had co-published with...
By Pam Belluck, The New York Times | 10.17.2025
Before dawn on a March morning, Doug Whitney walked into a medical center 2,000 miles from home, about to transform from a mild-mannered, bespectacled retiree into a superhuman research subject.
First, a doctor inserted a needle into his back to...
By Julia Black, MIT Technology Review | 10.16.2025
Consider, if you will, the translucent blob in the eye of a microscope: a human blastocyst, the biological specimen that emerges just five days or so after a fateful encounter between egg and sperm. This bundle of cells, about the size of...