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Over the past few months @mhdelaney investigated genomics in Ireland with @businessposthq. They trawled publicly available information & submitted numerous FOI & press requests.
Here's what we found out:
#𝗦𝗲𝗹𝗹𝗶𝗻𝗴𝗢𝘂𝗿𝗚𝗲𝗻𝗲𝘀
http://www.noteworthy.ie/selling-our-genes-5219781-Oct2020/
Over the past few months @mhdelaney investigated genomics in Ireland with @businessposthq. They trawled publicly available information & submitted numerous FOI & press requests.
Here's what we found out:
#𝗦𝗲𝗹𝗹𝗶𝗻𝗴𝗢𝘂𝗿𝗚𝗲𝗻𝗲𝘀
http://www.noteworthy.ie/selling-our-genes-5219781-Oct2020/
We found Genuity Science links with 13 hospitals, six universities, six research facilities, one health research network and two charities.
Our searchable table lists each facility, projects they are involved in, funding received and other details: https://public.flourish.studio/visualisation/3834713/
Our searchable table lists each facility, projects they are involved in, funding received and other details: https://public.flourish.studio/visualisation/3834713/
Hospital clinicians have become “agents of a company” due to the nature of agreements in place, according @Tupp_Ed.
Researchers are concerned about the lack of regulation around the length of time a private company can exclusively keep genetic data before it gives access to other researchers.
A research collaboration agreement between UCD and private company, Genuity Science, is “restrictive”, according to an expert familiar with such agreements.
Read our breakout article which includes the full text of the agreement (obtained via FOI): http://www.noteworthy.ie/selling-our-genes-ucd-agreement-5220753-Oct2020/
Read our breakout article which includes the full text of the agreement (obtained via FOI): http://www.noteworthy.ie/selling-our-genes-ucd-agreement-5220753-Oct2020/
No “exclusivity period” is defined in the UCD agreement. It “will be agreed on a case by case basis for each study taking into account any contractual obligations of GMI to its commercial partners”.
This “is a massive own goal by UCD" - Expert who reviewed the agreement for us.
This “is a massive own goal by UCD" - Expert who reviewed the agreement for us.
Researchers are making “the best of the situation” by working with the private sector but most would prefer a public genome project due to data access concerns.
Read our breakout article which explores this issue: http://www.noteworthy.ie/selling-our-genes-public-project-5220771-Oct2020/
Read our breakout article which explores this issue: http://www.noteworthy.ie/selling-our-genes-public-project-5220771-Oct2020/
. @RoisinShortall joint leader of the Social Democrats, is calling for Ireland to follow “international best practice by introducing a public genomics programme, with the State playing the leading role”.
She told the investigation team that “anything less is reckless”.
She told the investigation team that “anything less is reckless”.
. @AvrilKennan said that a public genome project would hopefully be broader and target disease areas not of commercial interest.
“The big thing would be the availability of the data to all scientists who make a worthy case for why they should access that data.”
“The big thing would be the availability of the data to all scientists who make a worthy case for why they should access that data.”
Our colleagues on the investigation team @killianwoods & @whytebarry also wrote a feature in the PostPlus section of the Business Post today.
They explore “engagements” with the DPC & Genuity Science's company structure in more detail.
Read it online: https://www.businesspost.ie/health/genes-for-sale-the-harvesting-of-irish-genetic-data-7c72aabe
They explore “engagements” with the DPC & Genuity Science's company structure in more detail.
Read it online: https://www.businesspost.ie/health/genes-for-sale-the-harvesting-of-irish-genetic-data-7c72aabe
This work wouldn't have happened without your support as we are a community-driven crowdfunded site.
Thank you for continuing to support our reporters and investigative journalism.
If you would like to support our work, we have a general fund: https://www.noteworthy.ie/general-fund
Thank you for continuing to support our reporters and investigative journalism.
If you would like to support our work, we have a general fund: https://www.noteworthy.ie/general-fund
#𝗦𝗲𝗹𝗹𝗶𝗻𝗴𝗢𝘂𝗿𝗚𝗲𝗻𝗲𝘀
Read the full @noteworthy_ie investigation now: https://www.noteworthy.ie/selling-our-genes-5219781-Oct2020/
Read the full @noteworthy_ie investigation now: https://www.noteworthy.ie/selling-our-genes-5219781-Oct2020/
