Forum:Data saves lives campaign - EU
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9.2 years ago
Emily 23k

Some of you in the EU might be aware of the Data Saves Lives campaign. This is in response to proposed EU legislation, which wants to restrict use of genomic data by making researchers apply for individual consent from each individual whose data is involved on a case-by-case basis. If this had applied to, say, 1000 Genomes data, then every person who used 1000 Genomes, even for minor things like checking a single allele frequency, would have to get individual consent from all of the 2577 people whose genomes are in 1000 Genomes, which means that in all reality they wouldn't bother and the research wouldn't happen. What actually happened was that all the 1000 Genomes individuals gave blanket consent, signing a form to allow their data to be used freely and anonymously, and as a result the research community has greatly benefited from this resource.

The Data Saves Lives campaign wants to keep the option for blanket consent available, thus allowing open research to continue leading to breakthroughs in health that could save lives. If you're in the EU and agree with this, you can get involved with the Twitter campaign. Tweet a picture of yourself holding a sign that supports the campaign (see the link in the previous sentence for ideas) with the hashtag #datamattersEU to show your support.

If you want to know more, there's a really nice blog post on it by the Sanger Institute.

genome • 1.3k views
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Tweet a picture of yourself holding a sign that supports the campaign (see the link in the previous sentence for ideas) with the hashtag #datamattersEU to show your support.

Why not post a petition on change.org?

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Good question. I'll put it to the campaign organisers.

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