Opinion: Why has the State invested €70m in a private company to look at our genetic data?

Data Privacy, Genetics, Genomics, Noteworthy.Ie, Research And Innovation, Selling Our Genes

Expert says it is 'unfathomable' that the government has funded the collection of 400,000 Irish genomes, shutting them off from most researchers.

Data Privacy, Genetics

16.2.2020

Expert says it is 'unfathomable' that the government has funded the collection of 400,000 Irish genomes, shutting them off from most researchers.

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.

Dr Ciara Staunton GENOMIC MEDICINE IS enabling scientists to map out our genetic code which may help them better understand some diseases and medical conditions that affect us. With the ability to rapidly change the future of healthcare, many countries have integrated genomic medicine into the public health system. In the UK, the publicly-funded 100,000 Genomes Project is attempting to sequence 100,000 genomes from 85,000 NHS patients. It is a private company, owned by the Department of Health and Social Care, that partners with industry and has transparent policies in place on ethics, access to the genetic data and engagement with patients and the public. Ireland too has decided to invest in genomic medicine. Rather than ensure that this investment is in a manner that best serves the Irish public, €73.5 million was given to Genomic Medicine Ireland (GMI), a company owned by the Chinese pharmaceutical company WuXi with zero public ownership, to sequence the genomes of 400,000 Irish people. This investment has serious legal and ethical concerns that are likely to negatively impact genomic research in Ireland. This genetic data will not be generally available for researchers in Ireland, but will be held in the hands of a commercial entity that is driven by profits. The sharing of data for research is seen as important in the success of genomic research. However access to this data will be determined by a commercial entity who will make decisions based on their commercial best interests and not the best interests of the Irish public, despite the considerable public investment. There is currently no publicly available access policy and researchers in Ireland are likely to find themselves in a position whereby they are competing with pharmaceutical companies to get access to this data for research. If granted access, they will have to use public research money to access this data; this means the Irish taxpayer will be paying twice. Consent risks GMI has made it clear that the consent of the participants is being obtained. However, genomic medicine is complex and the possible risks, particularly regarding the privacy of the individual, are often unknown. It is unclear what level of information and engagement the participants are given. Importantly it is unclear whether they are aware that a commercial entity now has their data and may opt to sell their data to another commercial entity. Of particular concern is that participants may be consenting to the transfer of their genetic data outside of the EU. If they consent to this and the data is no longer in the EU, their genetic data will no longer be subject to the rights and protections granted to them under the GDPR. The lack of a legal and ethical governance framework that is informed by stakeholder engagement for GMI is particularly troubling. The introduction of genomic medicine, particularly when supported by commercial entities, is usually done in conjunction with public engagement. This ensures that public concerns are identified and addressed and that there is public trust in the endeavour. Generally there is strong involvement from patient groups and the general public at the outset, that continues right through the research cycle to the integration of genomic medicine into the public health system. Why were we not consulted? The Irish government has failed on this front. It has failed to consider the public’s views on who should have access to this data, the impact that a company deciding on access and use of their genetic data may have on public trust, and GMI shows no signs of developing a coherent legal and ethical framework that is informed by engagement with the public. Commercial involvement in genomic medicine is important if we want to translate the research into clinical care. Public-private partnerships are therefore necessary in this domain. However the interests of private companies are different and their involvement in genomic medicine requires careful consideration. Related Reads 30.03.19 Genomics Medicine Ireland is fretful over data rules hampering its DNA research business 02.01.19 Genomics Medicine Ireland will open a Dublin centre to collect and study people's genetic data It is unfathomable why the Irish government decided to invest over €70 million in a privately owned company. While there is a clear benefit for GMI, Irish research will suffer with a poor prognosis for patients in Ireland. Dr Ciara Staunton (@ciaralstaunton) is a senior lecturer in Law at Middlesex University in London, a senior researcher at the Institute for Biomedicine, Eurac Research, in Italy, and a visiting researcher at the Brocher Foundation in Switzerland. 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>Want an inside look at the investigations we currently have under the microscope at Noteworthy? Sign up here: Read more: TheJournal.ie

How were these 400,000 Irish genomes obtained? Was patient consent obtained? Explicit or otherwise? Who owns the copyright and patentable rights in the genetic data of the 400,000 Irish people who may not even be aware that their genetic data has been misappropriated? Who is in charge? Who signed off on this? These people need to be known and accountable for throwing state money.

Why is this being outsourced to China, very concerning.

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