Selling Our Genes: UCD agreement with for-profit DNA collection company 'restrictive'

A RESEARCH COLLABORATION agreement with private company, Genuity Science, is “restrictive”, according to an expert in the area familiar with such agreements.

This agreement, signed in March last year, details the obligations, duties, intellectual property and other rights for both the company and university for research that they undertake.

Noteworthy obtained the full text of this, which you can view here, through an FOI request to the university. This was done as part of our SELLING OUR GENES investigation, in collaboration with the Business Post.

At the time of its announcement, professor Orla Feely, UCD Vice President for Research, Innovation and Impact said that “this agreement is the culmination of extensive discussions around how opportunities in genomic medicine and its benefits to patients can be realised in a careful and appropriate way”.

A spokesperson for UCD said that “many countries have embraced the power and promise of genomics by establishing national policies on public genome initiatives”. They continued:

Ireland has not done so to date. In the absence of a public genome project, UCD has partnered with Genuity Science Ireland to undertake research aimed at improving the lives of our population.

‘Restrictive’ conditions 

When we asked an expert to review it, they were concerned at a number of sections in the agreement. We agreed to preserve the anonymity of this expert because of their professional position, but can confirm that they have no conflict of interest in assessing this particular agreement.

Genuity Science Ireland disagreed with the points made by this expert about the agreement, according to a spokesperson.

The agreement states that the institution, investigator and research team shall “not use the bio-samples, the participant data collection forms, the GMI databases (partially or wholly) or the research results for any purpose other than as specified and agreed under this agreement”.

These conditions, according to the expert who reviewed it for the investigation team, are quite “restrictive” in light of international best practice.

The Intellectual Property Office (IPO) in the UK, the government body there responsible for intellectual property (IP) rights, published seven model research collaborations agreements for universities and companies that wish to undertake collaborative research projects together.

Five out of seven of these agreement models recommend that the institution owns the results or has the right to use the results for research and academic purposes.

“The assumption underpinning the model agreements is that the Collaborator will have greater rights to exploit the results of the research project where it has made a greater contribution (financial or other) to the project,” according to the accompanying decision guide. Where a collaborator wants to own the IP rights, the IPO states that the return to the Institution should be greater than if these rights were retained.

Data sharing concerns

No “exclusivity period” is defined in the agreement. Instead, it “will be agreed on a case by case basis for each study taking into account any contractual obligations of GMI to its commercial partners”.

The expert who reviewed the agreement told Noteworthy that, in their opinion, this “is a massive own goal by UCD”.

Extract of the agreement that deals with the exclusivity period.

A spokesperson for UCD said that “all projects conducted under the framework have a separate dedicated agreement, including an exclusivity period that reflects the circumstances of that project, and commence only after approval by the relevant ethics committee”.

They also stated that through their “partnership with Genuity, university investigators also gain access to the data generated ensuring that the maximum research return is attained”, and added: 

We recognise that genomic science presents some challenges with both ethical and data protection questions to the fore. In undertaking any research in this area, the university pursues the highest standards possible.

A spokesperson for Genuity Science Ireland stated: “We actively share the data (including the genomic data) that is generated in our research programmes with the research groups for their own research purposes.”

Exclusive rights 

Another point of concern was the fact that the agreement states that “GMI shall own all intellectual property in, and shall have the exclusive right to commercialise, the GMI databases, the GMI genomic database results and the GMI discovery database results”.

It also states that the university, unless otherwise agreed, will not get access to the GMI genomic database until 50 percent of the entire participant recruitment target for the national GMI research study into the relevant disease in Ireland is complete.

A spokesperson for UCD stated:

The agreement ensures in particular that these collaborations observe best practice in their handling of patient consent, data protection and intellectual property.

These collaborations are “already producing valuable academic outputs, which we hope will translate into better care for patients”, they added. 

Through the agreement, the spokesperson said that UCD created a framework for the university and Genuity to work together in a number of areas. 

These include “genomics research in a number of diseases, including autoimmune disorders and cancer, development of a taught graduate programme to provide our students with the expertise in the genomics field, in partnership with leading hospital-based clinicians, developing a comprehensive approach to identifying clinically significant variations [and] facilitating the national policy discussion by hosting the genomics summit”.

The UCD spokesperson did not comment on how long the agreement would run for, if there was any review period or if the university did a cost-benefit analysis. 

Hospitals on governance group

This agreement is signed by UCD and GMI (now Genuity Science) but it specifies that “GMI wishes to engage with the University to perform, in conjunction with its affiliated hospitals, research activities for various studies into the genomic basis of certain complex diseases in Ireland”.

Representatives from two hospitals, the Mater Misericordiae University Hospital and St Vincent’s Hospital Group Limited, will also sit on the governance group, according to the UCD-GMI agreement.

These hospitals are in the Ireland East Hospital Group (IEHG) but in a statement to Noteworthy a spokesperson said “there is no IEHG-Genuity agreement” and added: “The reference in the report refers to an agreement between our academic partner, University College Dublin and Genuity Science.”

UCD’s Feely, who is a co-signatory of the agreement, also said at the time:

Our collaboration with GMI provides a significant platform for UCD, and our affiliated hospitals within the Irish East Hospital Group, to build capacity, skills and infrastructure in the area of genomic medicine.

When asked to comment on these contrasting statements, the HSE said “I understand the Hospital Groups have responded directly”.

It is the understanding of the investigation team that Trinity College Dublin (TCD) are also in the process of developing an agreement with Genuity Science. A spokesperson for TCD said they “can confirm that Trinity is in the early stages of putting together an agreement”.

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Read our main investigation on how Government inaction is allowing the private sector to take control of our DNA >>

Our Business Post colleagues on the investigation team also published an article today which delves more deeply into issues with Genuity Science which you can read now.

This investigation was carried out by Maria Delaney of Noteworthy in collaboration with Killian Woods and Barry Whyte of the Business Post. The Noteworthy costs were funded by you, our readers.

Noteworthy is the community-led investigative journalism platform from TheJournal.ie. You can support our work by helping to fund one of our other investigation proposals or submitting an idea for a story. Click here to find out more.