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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
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FoundMyFitness Genetics – Genome Analysis Tool
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fitness  test  genetic  genome  dna  analysis 
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" 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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