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recent bookmarks from jmSelling Our Genes: Government inaction allowing private sector to take control of our DNA2020-10-05T09:56:24+00:00
https://www.thejournal.ie/selling-our-genes-5219781-Oct2020/
jmGenuity Science, the main company involved in DNA sequencing in Ireland, has at least 25 links to facilities around Ireland. These include funding and collaborations with major hospitals, universities, research facilities and charities.
A collaboration agreement signed between Genuity Science and UCD is “restrictive”, according to an academic expert, though Genuity Science Ireland disagree with this assessment. We have the full details in this breakout article.
Hospital clinicians have become “agents of a company” due to the nature of agreements in place, according to experts.
Researchers are making “the best of the situation” in Ireland by working with the private sector but most would prefer a public system due to data access concerns.
Lack of Government policy and adequate regulation means that private companies have no limit on how long they have exclusive access to the data they collect from Irish patients.
Researchers and patient representatives are concerned about a potential erosion of trust in genetics research in Ireland.
]]>genomics genuity genetics ucd gmi ireland data-privacy data-protection researchhttps://pinboard.in/https://pinboard.in/u:jm/b:ec2dde2c0218/Opinion: Why has the State invested €70m in a private company to look at our genetic data?2020-02-17T17:28:43+00:00
https://www.thejournal.ie/readme/dna-privacy-commercial-research-5002574-Feb2020/
jmIn the UK, the publicly-funded 100,000 Genomes Project is attempting to sequence 100,000 genomes from 85,000 NHS patients. It is a private company, owned by the Department of Health and Social Care, that partners with industry and has transparent policies in place on ethics, access to the genetic data and engagement with patients and the public.
Ireland too has decided to invest in genomic medicine. Rather than ensure that this investment is in a manner that best serves the Irish public, €73.5 million was given to Genomic Medicine Ireland (GMI), a company owned by the Chinese pharmaceutical company WuXi with zero public ownership, to sequence the genomes of 400,000 Irish people. This investment has serious legal and ethical concerns that are likely to negatively impact genomic research in Ireland.
]]>ireland genomics genomes medicine health future china wuxi gmihttps://pinboard.in/https://pinboard.in/u:jm/b:a78e1e275c03/Rossa McMahon re GMI2019-07-15T17:03:53+00:00
https://twitter.com/rossamcmahon/status/1145436655756689409
jmGMI is a big, expensive company. It announced planned investment injection of $400m last year. It is engaged in a hot industry - hot because of investor interest and hot because of regulatory/ethics concerns.
GDPR is not new. It has been known since 2016. Data protection law is not new. It has been known since 1988. The impact of these laws on genetic data collection & use is not a surprise. So if you have a $400m+ business and this is a key business issue, you have taken advice. And you have, no doubt, been in a position to take that advice from some of the best and/or most expensive advisors available. Assumptions are dangerous, but I think it is fair to assume this has happened.
So read the story again.
Would you be looking for repeated meetings with [Department of Health], answers to questions on regulatory matters and assurances from the State, if you had legal advice of your own to the effect that you are operating or can operate as your currently are?
]]>gmi genomics genetics data-privacy privacy gdpr irelandhttps://pinboard.in/https://pinboard.in/u:jm/b:aa19ff9e3bf1/Ireland putting profit before people with genomic medicine strategy2019-07-15T14:05:11+00:00
https://www.irishtimes.com/opinion/ireland-putting-profit-before-people-with-genomic-medicine-strategy-1.3944438
jmMuch 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 genomicshttps://pinboard.in/https://pinboard.in/u:jm/b:8e15283dac7c/