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 Yelena Biberman and Jonathan D. Moreno, Bioethics Forum | 04.16.2024
A quiet biological revolution in warfare is underway. The genome is emerging as a new domain of conflict. The level of destruction that only nuclear weapons could previously achieve is fast becoming as accessible as a cyberattack.
Now for the...
By Jorge Barrera and Rachel Houlihan, CBC | 04.09.2024
A Canadian DNA laboratory knowingly delivered prenatal paternity test results that routinely identified the wrong biological fathers — ruling out the real dads — and left a trail of shattered lives around the globe, a CBC News investigation has found...
By Timnit Gebru and Émile P. Torres, First Monday | 04.14.2024
The stated goal of many organizations in the field of artificial intelligence (AI) is to develop artificial general intelligence (AGI), an imagined system with more intelligence than anything we have ever seen. Without seriously questioning whether such a system can...
By Carey Gillan, UnSpun | 03.18.2024
A Mexican standoff with the United States turned into a Mexican smack-down this month with the release of Mexico’s formal rebuttal to US efforts to overturn limits Mexico has ordered on the use of genetically modified (GM) corn and the...