genome   2012

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Ireland putting profit before people with genomic medicine strategy
From David McConnell and Orla Hardiman at TCD:
Much of the medical information sought by GMI [Genomics Medicine Ireland] has been collected from patients in public hospitals funded by the exchequer at great expense [...]. Clinicians are being contracted and asked to obtain consent from their patients to transfer clinical information to GMI, along with a tissue sample for WGS [Whole Genome Sequencing]. We understand GMI will pay for the additional hospital clinical costs required for the project. It will obtain the full genetic code for each patient (WGS), and it will analyse all the data. For the most part .... there is minimal tangible benefit to the patient who participates in this programme.

It is important to realise that GMI will own all the clinical and WGS data that they have acquired from the health service, which is of considerable commercial value. GMI will also have complete control over the research and any outcomes. Participating patients do not appear to have access to their data held by GMI – and there does not seem to be a “right to be forgotten”, despite the commercial nature of the enterprise. Moreover, the genomic and clinical data may also be transmitted outside of the European Union, and thus will not be protected by the stringent data-protection laws within the EU.[....]

The Government has made a very big investment in GMI. There may be a view that it is not necessary to provide any additional public investments in genomic medicine in Ireland. However, to those of us who care about the longer-term development of genomic medicine in Ireland, this would be a seriously short-sighted approach. One person in 20 will develop a genetic disorder in their lifetime and half of the Irish population will experience a form of cancer. These and many other patients should be able to benefit from a publicly-available genomics project that can drive new medical care in Ireland.

Genomic medicine is here to stay. We urgently need a properly governed genomics programme in Ireland that will ensure that Irish genomics remains within the public (non-commercial) domain, and that data obtained from Irish citizens will be used to benefit the entire Irish population.

(via Aoife McLysaght)
gmi  wgs  genome  open-data  data-privacy  gdpr  privacy  health  medicine  ireland  genomics 
yesterday by jm
Genome - Wikipedia
Genome sizes are completely wild. You need 3.3GB of data for a human, 2.7GB for a mouse. 130GB for a lungfish, 150GB for a japonica plant, 430MB for a pufferfish, possibly 670GB for a goddamn amoeba?
genome  japonica 
16 days ago by yorksranter
(429) https://twitter.com/i/web/status/1127968384518373376
Did you know that the nucleus of each of our contains a copy of our ? That's a full set of the 20,000…
genome  cells  from twitter_favs
9 weeks ago by tolkien
FoundMyFitness Genetics – Genome Analysis Tool
There’s more to our genes than just the so-called good and bad.
By learning more about ourselves, we can find out in what specific environmental and lifestyle contexts our genes can behave at their very best.
fitness  test  genetic  genome  dna  analysis 
10 weeks ago by skinna123
Impute.me
"cImpute.me is a non-profit genetics analysis site run by independent academics since August 2015. Our design goal is to provide analysis at the cutting edge of what is currently known and possible in genetics research. We try to provide this information in a manner that is as user-friendly as possible, but we are aware that it may be difficult to digest concepts such as polygenic risk scores and imputation confidence. Their difficulty level does not make them less crucial in genetic understanding. Few traits are governed by only a single gene or SNP. "
genome  gwas  bioinformatics  23andMe  prediction 
april 2019 by mark.larios

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