THREAD

Update on Genuity Science (previously Genomics Medicine Ireland) & Beaumont brain tumour study: The opt-out deadline has been extended to 31st December 2020 & this date is now listed here: http://btis.ie/about/ 

See a thread of threads below to find out more!

Back in April, I wrote about concerns over timing of opt-out 'publicity campaign' for genomics research... ( https://jrnl.ie/5086926 ).

Since then this deadline was pushed back from June to September... and now to the end of the year.

Experts have had concerns about this study since last year. See this thread by @tupp_ed which begins in August 2019: https://twitter.com/Tupp_Ed/status/1158648283037949952

. @cags_mcs was interviewed by @killianwoods & @whytebarry about this in May as she discovered that a sample of her dead mother's brain tumour was being given away to this for-profit company unless she wrote an email to object.

See her thread on this: https://twitter.com/cags_mcs/status/1267153554302816257

A thread by @klillington from last week explains the opt-out process and why there are concerns over the timing of it as well as informed consent: https://twitter.com/klillington/status/1304142687931695106

Finally, @eosull has been campaigning on this issue as a cancer patient advocate. Read her thoughts on this opt-out process: https://twitter.com/eosull/status/1305145639387398144

At @noteworthy_ie, we are currently working on an investigation into genomics research in Ireland, including what is being done to protect genomes and data privacy in terms of genetic material.

This will be published in the coming weeks. Find out more: https://www.noteworthy.ie/proposal/private-genetics-database-76-Jan2020