https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧵" title="Thread" aria-label="Emoji: Thread">THREAD https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧵" title="Thread" aria-label="Emoji: Thread">

This important and timely proposal on genomics is now 90% funded thanks to your generous support. https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧬" title="DNA" aria-label="Emoji: DNA">

We would love to get to 100% to start the research. https://abs.twimg.com/emoji/v2/... draggable="false" alt="💯" title="Hundert Punkte Symbol" aria-label="Emoji: Hundert Punkte Symbol">

See the thread below for the reasons why: https://www.noteworthy.ie/proposal/private-genetics-database-76-Jan2020">https://www.noteworthy.ie/proposal/...

1) The State has invested over €70 million through the Strategic Investment Fund in a private company who aim to collect the DNA of 400,000 volunteers. https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧬" title="DNA" aria-label="Emoji: DNA">https://abs.twimg.com/emoji/v2/... draggable="false" alt="💰" title="Geldsack" aria-label="Emoji: Geldsack">

We want to examine the decision-making process as to why a private rather than public initiative was funded.

2) The private company Genomics Medicine Ireland (now trading as Genuity Science) is aiming to collect the DNA of almost one in every 10 people in Ireland.

So, we also want to look at what is being done to protect data privacy in terms of genetic material.

3) An Irish research committee recently decided that the genomic data collected during a health research project was to be made publicly available.

We want to see if DNA-collecting companies are doing this for other projects https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧬" title="DNA" aria-label="Emoji: DNA"> https://abs.twimg.com/emoji/v2/... draggable="false" alt="📄" title="Seite mit der Schriftseite oben" aria-label="Emoji: Seite mit der Schriftseite oben">

Here is a great explainer from @ciaralstaunton about State investment in GMI (now Genuity Science) which she says “has serious legal and ethical concerns that are likely to negatively impact genomic research in Ireland”. https://tinyurl.com/yankq8x9 ">https://tinyurl.com/yankq8x9&...

Our reporter @mhdelaney is also closely following developments on this case, including her recent piece on concerns over consent and data privacy for a study to use brain tumour samples of living and dead patients: https://tinyurl.com/ya888wyt ">https://tinyurl.com/ya888wyt&...

We can start digging deep into all of these above issues as soon as the proposal is fully funded. https://abs.twimg.com/emoji/v2/... draggable="false" alt="🕵️‍♀️" title="Woman detective" aria-label="Emoji: Woman detective">

Just a little ways to go now https://abs.twimg.com/emoji/v2/... draggable="false" alt="🛣️" title="Autobahn" aria-label="Emoji: Autobahn">

Can you help us to get there? https://www.noteworthy.ie/proposal/private-genetics-database-76-Jan2020">https://www.noteworthy.ie/proposal/...