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Derick Hudson via Shutterstock Sign at the entrance to Beaumont Hosptial
# Selling our genes
Beaumont researchers change opt-out deadline for genomics study following calls by Health Minister
Concerns were raised in the Dáil because “public awareness of this significant proposal is very limited”.

LAST UPDATE | Jun 12th 2020, 6:01 PM

THE DEADLINE HAS been extended by Beaumont Hospital for people to opt-out of a genomics study, following calls for this in the Dáil yesterday. 

This evening, the hospital stated that “due to the Covid-19 pandemic, the date on which patients and family members of deceased patients can request that their samples and data are not included in research for the establishment of a Brain Tumour Information System is being extended from today, June 12th, to September 14th.”

In a statement to Noteworthy, it continued: “Further advertisements on the research will be placed in national media in the coming weeks.” 

This follows Health Minister Simon Harris calling on researchers at the hospital to extend the deadline to opt out of research that will use brain tumour samples of living and dead patients.

Speaking in the Dáil yesterday, Harris said he will “undertake that my office will make contact today with the HSE in Beaumont Hospital to outline our view”.  

Two notices about the opt-out process for “adult patients and family members of deceased adult patients” were put in three national newspapers by Beaumont and Genomics Medicine Ireland (GMI), on 13 March, the day the schools closed due to the pandemic, and one on 25 April. The deadline to opt-out was originally today, 12 June.  

Róisín Shortall, joint leader of the Social Democrats, said “the handling of this issue by the State has been questionable”. She said “that period has coincided with Covid-19 and because of that, public awareness of this significant proposal is very limited”. 

Concerns were previously voiced by researchers who were worried that affected patients and families would not see notices due to Covid-19 restrictions. 

  • (Read more here on how you can support a major Noteworthy project delving into why a private rather than public initiative was funded to sequence Irish genomes.)

The study, to be conducted by Beaumont Hospital in partnership with GMI, intends to conduct whole genome sequencing on archived brain tumour samples from adult patients who have previously undergone treatment at the hospital.

GMI, a private company owned by WuXi NextCODE which is based in Europe, China and the United States, aims to collect the DNA of 400,000 volunteers and are involved in a large number of research projects with both Irish hospitals and universities.   

“Deadline should be extended”

Harris stated that the Health Research Consent Declaration Committee (HRCDC) has “written to the people involved in the project highlighting this issue and seeing if they would amend the time period”, adding in his statement that “they should amend this time period”. 

Shortall asked Harris to extend the deadline “given all of the concerns and big question marks around the probity, data protection and ethical aspects of this proposal”.

He said that “regulations do not permit me, as Minister, to amend the decisions or vary the conditions”. He added: “I want to say very clearly on the record of this House that I believe the deadline should be extended.”

The researchers had to apply to the HRCDC to be exempt from having to seek informed consent from brain tumour patients, before sequencing their DNA from archived tissue samples.

The HRCDC initially rejected the research application stating “a ‘for-profit’ organisation processing personal data introduces a higher risk that data subjects may have a deeper concern for their privacy rights”.

However, on appeal the committee stated that a “publicity campaign drawing attention to the proposed research and affording data subjects the possibility of withdrawing their samples from the research will improve somewhat the protection afforded to the privacy of the data subjects”. They granted approval on condition of this publicity campaign.

Notice Part of the notice that appeared in national newspapers on 25 April.

In response to Shorthall, Harris said “the principal point the Deputy makes is that where there is an opt-out rather than an opt-in there is a greater burden on those carrying out the research to make sure that everybody who wishes to opt out has the ability to do that”.

He said he shared Shortall’s concern that “that may not have been the case”. 

As is stood when this article was originally published yesterday, if people do not contact the research team by today, “it will not be possible to be excluded from the research”, according to the research website. However, this has now been extended to mid-September. 

Additional reporting from Christina Finn.

SELLING OUR GENES Investigation 

Do you want to know if the Government should be funding a private company to collect 400,000 Irish people’s DNA?

The Noteworthy team want to do an in-depth investigation into why a private rather than public initiative was funded to sequence Irish genomes and find out what is being done to protect Irish genomes and data privacy in terms of genetic material.

Here’s how to help support this proposal>

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