GenomeDenmark: The Goal Is to Make a Difference for the Patients – University of Copenhagen

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09 February 2018

GenomeDenmark: The Goal Is to Make a Difference for the Patients

Personalised Medicine

Danish patients can benefit significantly from research and development in personalised medicine. Because of that, Dean Ulla Wewer and all other Deans of health and medical sciences in the country fully support National Genome Center.

Feature article in Altinget by Dean Ulla Wewer, University of Copenhagen, Dean Lars Bo Nielsen, Aarhus University, Dean Ole Skøtt, University of Southern Denmark and Dean Lars Hvilsted Rasmussen, Aalborg University.   

In the past weekend the British newspaper The Guardian published an excellent article on a research project known as the ‘100,000 Genomes Project’. The project has an ambitious goal: to sequence 100,000 genomes from individuals, some of which suffer from rare diseases. A rare disease is one that less than one out of 2,000 citizens suffers from. There is believed to be between 5,000 and 8,000 rare diseases, which means that as many as seven per cent of the population is affected. The British project collects biodata from 70,000 individuals, and the overall goal of the research project is to gain even greater knowledge of a series of rare diseases – why they have developed, and how they are best treated.

The project was announced in 2012 by then Prime Minister David Cameron and has received great national support from the most prestigious research institutions in the country and the population. In the mentioned article in The Guardian the ambitious research project is described through a series of concrete examples of children and parents who have made their DNA and health data available to the researchers. We hope the Danish media will be inspired by the nuanced and very respectful mention of research’s significance to the individual patient. We need opportunities to conduct genome sequencing of both rare and widespread diseases like cancer to benefit Danish patients – and as soon as possible! 

Read the article from the Guardian 

Danish Biobanks and Data Security Are Among the Best – and Have Never Been Better

In Denmark we have – with permission from our health authorities – used patient data both in research contexts and clinical practice for many years now. However, using so-called whole genome sequencing we are now able to supplement this data with precise information about the cells’ DNA sequences, both the ones that are innate and the ones that change. What is important is that we, by compiling lots of data about groups of diseases (population studies), can gain a better understanding of the condition of the individual patient. We must be able to offer the best possible treatment with the fewest possible side effects. This is central to what we call personalised medicine or precision medicine. And it is a development that is progressing rapidly. 

Data security is crucial to various levels of modern society, not least when it comes to critical data about the genome. The large amounts of data, so-called big data, gained through DNA sequencing must of course be stored securely on large servers, of which Computerome is the largest we have in Denmark.

Computerome is specially designed to store data from the biological and medical sciences and is also used for storing data from patients receiving treatment, e.g. cancer patients.  

The security measures include, among other things, the fact that data cannot be downloaded by the individual employees, and that information about employees’ actions are saved, as is also done by e.g. the police. In addition, the various users of Computerome are unable to access each other’s data. The individual researchers can only work with the specific data for which they have been authorised.

GenomeDenmark

As deans of the country’s four faculties of health and medical sciences responsible for the medical study programmes we fully endorse the effort to establish the Danish national genome centre, GenomeDenmark, which we consider a main precondition for future research and patient treatment. Research which also plays a main role in our opportunity to enter into international research collaborations. Naturally, we need to discuss ethical aspects such as consent and random findings, and we must communicate our knowledge to the citizens and educate our health professionals in a sober, nuanced and evidence-based way. We will do our utmost to conjure away insecurities and misunderstandings to ensure that the population and not least the patients are comfortable with the new digital opportunities and trust data storage to be secure.