While our focus is on #COVID tracking privacy, a worrying advert in today’s @irishtimes advert today requesting consent from families of deceased brain tumour patients. Plan to share #DNA with Chinese WuXi NextCODE owned company GMI.
Ireland is handing over full genome sequence data from hospital databanks to for-profit companies due to untested oversight procedures. Article by @klillington in November 2019 highlighted wider concerns on GMI data use by @DPCIreland https://www.irishtimes.com/business/technology/ireland-s-national-genome-project-should-not-be-in-private-control-1.4097278
Advert is 1 of 4 to “tick the box” and obtain medical data consent for sharing DNA data with GMI. “family member(s) of a deceased...brain tumour patient...you may request ...samples are not included... before 12th June 2020. After this...it will not be possible to be excluded.”
The Health Research Declaration Committee initially rejected the application (19-006-AF3) citing concerns regarding the potential privacy risk of a “for-profit” accessing whole genome sequencing. https://hrcdc.ie/wp-content/uploads/2019/07/HRCDC-Meeting-Minutes-13.06.2019-APPROVED-.pdf
Subsequent appeal committee of 3 was appointed without all necessary expert by @simonharristd. It had concern data only shared w/ GMI, not wider research community. Issue of data leakage and use potential other use by GMI outside jurisdiction not addressed in appeal minutes
Relying on a lack of guidance available in Ireland, the appellants cited jurisdictions where there is a lesser protection than #gdpr allow for use data without consent if it is to expensive or difficult to obtain! https://hrcdc.ie/wp-content/uploads/2019/11/Appeal-Panel-MINUTES-03.09.2019.pdf
Relying on a lack of guidance available in Ireland, the appellants cited jurisdictions where there is a lesser protection than #gdpr allow for use data without consent if it is to expensive or difficult to obtain! https://hrcdc.ie/wp-content/uploads/2019/11/Appeal-Panel-MINUTES-03.09.2019.pdf
Relying on a lack of guidance available in Ireland, the appellants cited jurisdictions where there is a lesser protection than #gdpr allow for use data without consent if it is to expensive or difficult to obtain! https://hrcdc.ie/wp-content/uploads/2019/11/Appeal-Panel-MINUTES-03.09.2019.pdf
Relying on a lack of guidance available in Ireland, the appellants cited jurisdictions where there is a lesser protection than #gdpr allow for use data without consent if it is to expensive or difficult to obtain! https://hrcdc.ie/wp-content/uploads/2019/11/Appeal-Panel-MINUTES-03.09.2019.pdf
The Health Research Consent Declaration Committee subsequently noted:1)Dep. health to review appeal mechanism. 2)decision should not set precedence for future decisions. appeals committee of up to 7 inc. expert advice was appropriate (not 3 as in this case).
The Health Research Consent Declaration Committee subsequently noted:1)Dep. health to review appeal mechanism. 2)decision should not set precedence for future decisions. appeals committee of up to 7 inc. expert advice was appropriate (not 3 as in this case).
The Health Research Consent Declaration Committee subsequently noted:1)Dep. health to review appeal mechanism. 2)decision should not set precedence for future decisions. appeals committee of up to 7 inc. expert advice was appropriate (not 3 as in this case).
The Health Research Consent Declaration Committee subsequently noted:1)Dep. health to review appeal mechanism. 2)decision should not set precedence for future decisions. appeals committee of up to 7 inc. expert advice was appropriate (not 3 as in this case).
Questions:
1. Who is setting and interpreting Irish policies regarding medical data consent? HRCDC appeals committee?
2. What mechanisms will protect us from ethical dilemmas where hospital DNA data is shared with commercial entities that are controlled by non-GDPR countries?
3. How are the conflicting interests of researchers managed when they are a hospital data controller and also have an interest in commercial firm wishing to exploit the data?
4. How do we reconcile the greater good or non-consensual GDPR exemptions against unknown future exploitation of DNA data for unanticipated uses?
5. Are we blindly allowing opt-out consent on individual studies by hospitals (brain tumours, Alzheimer’s etc.) to eventually provide companies with a nation population of genome sequences?
With all of our focus on urgent COVID health and privacy issues can we reflect on how to protect our nation’s genomic data? https://www.thejournal.ie/readme/dna-privacy-commercial-research-5002574-Feb2020/ @simonharristd @donnellystephen @ocallaghanjim @loreillysf
Opinion: Why has the State invested €70m in a private company to look at our genetic data?

Dr Ciara Staunton says it is “unfathomable” that the government has funded the collection of 400,000 Irish genomes, shutting them off from most researchers.

https://www.thejournal.ie/readme/dna-privacy-commercial-research-5002574-Feb2020/
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