A recent amendment to the Italian Data Protection Code (Legislative Decree 196/03) prevents researcher to re-use genetic data in projects different than those the data are collected for.
The new section 110bis of the Data Protection Act verbatim reads:
In the realm of the scientific or statistic purposes, the Data Protection Authority may authorize the re-use of data, included the sensitive one, but with the exclusion of genetic data, provided that pre-emptive data minimization and anonymization are enforced that are considered adequate to protect data-subject. 1
So, according to this provision:
- genetic data gathered for a specific research purpose can’t be re-used anymore,
- other clinical data can be re-used but only if anonymized.
This provision puts scientific research under the control of the Data Protection Authority, creating unneeded, logicless burdens the work of genetic researchers.
This is another step ahead toward the death penalty imposed to those people whose life expectancy only relies upon the speed of the scientists in finding a cure for their disease.
I would actually know who will bear this burden on his conscience, provided that he owns one…
- Unofficial translation. ↩