Selling Our Genes is an investigative collaboration taht u into private sector access of public sector researchers and patient DNA by two national Irish media outlets – the Irish community-led crowdfunded platform, Noteworthy.ie, and Sunday newspaper, the Business Post. Concerns had been raised by patient groups about issues with consent and data ownership, in particular in relation to one study that intended to collect genetic data on over 9,000 brain tumour patients without consent. Our project was the first to delve into the controversial public-private partnership, reveal the extent of the connections and highlight concerns by patients, researchers and policy
The investigation showed the extent to which a private company has developed a network of arrangments that give it access to a vast amount of publicly-held genomic data in Ireland, which is in turn used for commercial gain.
By trawling through publicly available information and submitting numerous freedom of information (FOI) and press requests, the investigation revealed that Genuity Science, the main company involved in DNA sequencing in Ireland, has at least 25 links to facilities around Ireland. These include funding and collaborations with major hospitals, universities, research facilities and charities.
The state took action against the company’s plans to harvet genomic data from 9,000 patients by increasing the scope for patients (and their families) to opt out of this research.
The investigation also highlighted policy gaps such as the lack of Government policy and adequate regulation resulting in private companies having no limit on how long they have exclusive access to the data they collect from Irish patients.
The findings of SELLING OUR GENES were discussed by influential politicians, researchers and patients groups following publication. For example, the leader of one of the main Government opposition parties, the Social Democrats, said that SELLING OUR GENES was “a really important piece of in-depth journalism about how a private sector company got access to vast amounts of our DNA”.
Records gathered via Freedom of Information requests and information supplied by hospitals, universities and charities were translated into visualisations on Flourish:
The information is available open access to all members of the public so it can be used to show how Irish patient data is being used by private companies for commercial gain.
Google Drive was also used to make documents obtained via Freedom of Information requests available to the public.
What was the hardest part of this project?
The investigation took more than three months to complete.
The main obstacle we faced was gaining access to the publicly-held documents due to push back from state organisations, hospitals, universities and charities. Many of these groups that had links to private sector were reluctant to release the data held on file that should be released through Freedom of Information laws. We contested decisions by certain bodies that sought to restrict our access to records on file and eventually secured access.
Once we had received the documentation and records we required, the next big obstacle was translating all this data into a format that would communicate our findings to the reader and a compelling narrative that explained a complex topic.
What can others learn from this project?
Journalists who read our project, which involed gathering a lot of data, records and files, would learn from how we explained a very complex narrative to the reader.
Rather than honing in solely on the particulars of the contracts, deals and arrangements a private company has cut to gain access to Irish patient data, we used the data we gathered as a starting point to tell the stories of those affected by the grip the private sector has over Irish genomic data. Our approach meant our reporting was grounded in solid data, but showed the true effects of what we uncovered.
Additionally, any journalist who reads our project would also likely see our project as ripe for replication in their own country. The use of genomic data for commercial gain is developing in many countries, and it is a largely untold story.