Lilian Joensen

A new genomic bubble in construction in the Faroe Islands?

November 2011

 

In a world that has fallen in the deepest financial crisis, some are still being creative in order to subsist for a while recycling ideas that have been tried other places with not much success. It gets much more worrying when these projects are proposed in such a small Nation like the Faroe Island, where the people and the economy are so much more vulnerable to risky ideas that sound very interesting to the inexpert, at the same time that experts caution seriously against such proposals.

 

Science and business are a dangerous mix that makes scientific research risky and not reliable. One should be suspicious of the motives behind, when business comes to a little country asking for the possibility to let their citizens be donors in a joint venture with arguments that sound altruistic, though are not based on facts but on promises of immediate benefits of a scientific research the results of which might be decades away.

 

The markets were told some weeks ago, that the Faroe Islands would be the first to sequence an entire Nation[1],[2]. The population is genetically fairly homogenous. Data from the project, known as FarGen, will support research and personalised medicine. The project will start with 100 people selected at random, and should cover the entire population in around five years2.1.·It has been said that the Faroese people finally are ready to give their DNA to this genome sequencing project unlike in 1999. From speeches and interviews one can read: Like our Minister of Health I find the FarGen project very promising. I was Minister of Health in 1999 when there was an effort to start genetic research in the Faroes, at that time we and the Faroese people certainly were not ready[3] , when the Icelandic company DeCode approached us to use us as a check population to their own projects.. but the Faroese political system backed out of the process. The Faroese population at that time was probably not ready for a process like that…[4]

 

Some are very confident that the Faroese population knows about the project, but I have asked all the people I have been meeting at primary, secondary and tertiary schools, in the supermarket, at family and friends reunions, ever since I got a massage where I was told of this project by a Canadian friend, and I have still not met anybody who knows anything. I have asked teachers, some of them even biologists, I have asked nurses, I have asked bank employees, I have asked factory workers and fishers, and I have asked my pupils. I have even asked newly elected politicians and political active citizens of the Faroe Islands. Why are the Ministers and proponents of the project so sure that the people agree with the idea? And why does people not know what is being projected with their own genomes though the news is all over the internet? What are they waiting for? I don’t agree if they think that because the Faroese people have heard a lot about the CTD problem, and they wish that this and other genetic diseases that are more common among our population were subjected to public research funding, they automatically agree with having their genomes sequenced and attached to their health files. It might be significant to point out that, though some genetic diseases are more frequent here than in other countries, life expectancy is even higher than inDenmark[5]. Sharing half of my genome with the rest of the people of this country, I don’t like the way we are presented to the world by the scientific community. We seem to be in the focus only when it comes to bad genes or poisoning from PCBs, DDT and mercury in our traditional food. That is the way we are presented all too often. Our biological and psychological samples have given material to many scientific articles and authorships, and now they are coming for more.

 

The Minister of Trade and Industry showed his fascination to this project on the 17 February 2011 during the FarGen workshop when he welcomed the participants calling the meeting as a certainly special occasion to be given the opportunity to entertain so many high profiled international researchers, who have spent the whole day debating research opportunities based on the genes of the Faroese population. He said that he was confident that given the potential hidden in our most, personal and precious resource(meaning our genome) in the years to come, genetic and biotechnological events will be part of everyday business in the Faroe Islands. His thoughts went from the genome of the Faroese almost immediately to the other less personal and precious resources, fish and farmed salmon. The Minister described the Faroe Islands as: a biological and social laboratory inhabited by 50000 people and the place to make small-but-full-scale experiments all this in order to create business opportunities within genetics and biotechnurturing entrepreneurship within the knowledge industries. He mentioned a law in the making to enable us to build a science and innovation park in a public-private joint effort. The facilities will be open to both public and private research institutions and also to start-up entrepreneurs working in the fields of biotech, genetics, bioinformatics, etc[6]. Being a scientist that has worked in public health for several years, as a molecular biologist in one of the countries that has embraced  biotechnology with the same fanaticism shown in this speech, I really find this statements quite disturbing and worrying.

 

A day after the Faroese Minister expressed his excitement towards the promising opportunities he could envisage from putting the sequence of the Faroese most personal and precious resource in the hands of entrepreneurial businesses within the knowledge industries, more cautious and truly expert voices expressed their concern in an article published in Science Magazine warning against the new genomic bubble on the 10th anniversary of the Human Genome Project[7]. Evans et al. say:

Unrealistic expectations and uncritical translation of genetic discoveries may undermine other promising approaches to preventing disease and improving health….

…But claims of near-term applications are too often unrealistic and ultimately counterproductive. From the South Sea and dot-com “bubbles” to the ongoing housing market crisis, the world has seen its share of inflated expectations and attendant dangers. (Here I would like to add cases nearer the Faroe Islands, such as Stein Bagger and the Iceland’s business Vikings[8]) Science is immune to neither. (Think of the Milena Penkowa case[9]). If we fail to evaluate the considerable promise of genomics through a realistic lens, exaggerated expectations will undermine its legitimacy, threaten its sustainability, and result in misallocation of resources. Fueling unrealistic expectations for predictive genetic testing and uncritical translation of discoveries may also distract our gaze from other promising approaches to preventing disease and improving health.

Their applicability to patient care shows little promise; studies demonstrate that even combining dozens of risk (genetic) markers provides little clinically meaningful information. In the public health realm, the prospect of effectively stratifying populations as high or low risk, thereby guiding screening, is equally dismal. Given the multifactorial nature of common diseases and the weak predictive properties of genetic-risk alleles, the probability of misclassifying individuals as high or low risk is likely too great to make such an approach feasible in the general population for guiding such things as mammography or colorectal cancer screening.

…The public, researchers, and clinicians frequently fail to appreciate that the history of medicine is strewn with ideas once thought promising that did not pan out when scrutinized through the lens of evidence based medicine). Hormone replacement therapy, prostate-specific antigen screening, peri–myocardial infarction lidocaine, and many other good ideas, when prematurely implemented, created bubbles of expectation and investment

 

Evans et al. are warning against exactly what is being done in the Faroe Islands. After all, why did the Icelandic and the Estonian genomic projects, which were not much different from the one proposed in the Faroe Islands, fail to deliver the big businesses they were supposed to be?[10] , [11]

 

The contradictions in the arguments are also worrying from the ethical point of view. From reading all the information available on this issue, one gets the idea that the project is about getting the genomes sequenced so that they can be attached to the health file of the owner until a physician asks to get information about a particular disease. Those who propose this believe it will allow personal drug design. But this is not a reality now, and it will not be in the immediate future. On the other hand, in order to do the research that might some day make this hypothetical probability true, the genomic data of each Faroese citizen should be available for those who might want to do research on it. And since the idea is to make genetic research, the data should not be kept so anonymous, that scientists cannot use it. To do genetic and environmental research you need to get information about family, age, place, nutrition, psychology, etc. How can you achieve anonymity in a country of 50000 people, while providing other data?  But it must be anonymous due to ethical reasons. So I cannot see how the information contained in the Faroese genomes can be useful to research in order to be able to design drugs some day or other scientific aims. It does not make sense. If the sequence is hidden from everybody in a personal health file it will be meaningless data because today there is no way you can use this information to cure diseases you have not researched. And if the sequence is offered to the scientific community in open databases as the genomes of T. cruzi, E. coli, M. tuberculosis, Plasmodium spp. or the universal human genome, or otherwise, there is a high risk and even a certainty that employers, insurance companies or even a political system that might criminalize democratic activities in a future might get these data somehow, and use this against the person that owns the genome or even their progeny. We must remember that half of each of our genomes is passed to our children and so on. Neither can I imagine how the project can be interesting to businesses if it is kept protected in the patients file.

 

What worries me also is that all this excitement from those who, out of misinformed ignorance, believe that knowing the sequence of the four letters is a miracle solution in itself. What do they know about gene regulation or epigenetics, for instance. Therefore they lack any sense of reality and criticism. The more we know about the molecular biology of complex organisms as us, the more complex it becomes. I cannot see how one can offer people to design personalised medicine at this stage. Right now, it is only at the hypothetical level. Years of research must be performed. We can offer our selves as guinea pigs, but then the people must know the risks of having their genomic information offered to private or public research. Politician and lobbyists that might see the project as job opportunity to themselves and friends or family are blinded by marketing arguments that have no hold in reality as it is today. And teaching how the four letters become an amino acid sequence in the biology class to primary school or high school children will not bring more knowledge, since molecular biology is not so simple. And simplifying the knowledge to these levels will only misconstrue biological true knowledge even more.

 

Not least worrying is the fact that Illumina, which is a US company that is part of the Advisory Board of the FarGen project[12], 12.1* and is supposed to perform the sequencing, is apparently not in a good financial shape according the information available in different sites[13] , [14]. The US government has put this company in a rough patch reducing the funding to academic and research institutes that are a major part of Illumina’s customer base. And the downward trends seem to continue for several years and funding restrictions are limiting the number of new contracts awarded to gene sequencers[15]. And it is not only the US that is not providing funding to support the economy of the company. The EU is not getting better as a source of funding[16]. Illumina has announced that it will have to cut 200 jobs to reduce costs[17]., [18]  Furthermore, Illumina’s genotyping platform 610 Quad array produced errors in the identification of the SNPs genetic markers and was, in part, responsible for the retracting of a high profile study on genetic patterns tied to old age from not less than the scientific magazine Science. The article had erroneously reported 150 genetic variations that could be used to predict whether the person was genetically inclined to see their 100th birthday. Soon after the paper was published by Science, the researchers learned that the Illumina chip had been shown in unpublished studies by other investigators to produce incorrect results[19], [20].

 

While the US and EU are cutting funding the Faroese government might be stepping in to help the financial situation of this company. And it might have helped Illumina in getting Siemens interested in a project, and making the market believe that the company is expanding to the transnational level, since its value in the stock markets were risen on November 4th 2011[21]. But it only helped for a while. Investors are more cautious today than they were during other bubbles.[22] I hope the Faroese government is more careful with what they decide to do with the money from the taxes we pay and the planned plea to Denmark to increase the block grant for 2012. This kind of business could most probably not benefit the Faroese people’s health system, but might even impoverish it due to increased debt and misallocation of financial resources, that might be take from other sectors in order to support an illusion.. The project needs about 300.000.000 Faroese Kr. to begin with. And since Illumina needs to work with scientific groups that count on public funding, they will not provide funding to the project but will be paid, in stead, to do their job. The other Institution represented in the Advisory Board, the EMBL-EBI, gets funding itself that is less than the amount needed to start the FarGen project. The EMBL-EBI received  €40 million in internal and external funding for 2010[23]. It is difficult to see any other source of funding than the Faroese state.

 

Anyway, we should be able to get an explanation about how this amount is meant to be used exactly and how they calculate the expenses, etc. The National Institute of Health, in the US, calculate that the fully loaded cost of sequencing a whole genome for 2012 is U$S 15.000.-[24] (in Faroese croner it might be about 83.000). On the other hand, Illumina says that they will lower the price for mapping all the genes in a single human for research to U$S 4000.-[25]. (in Faroese croner about 23000).  If it goes bad, we can add to the important debt we already have, and end like Iceland and Greece for pretty much the same reasons7. And if it is the State that puts the money, neither Illumina nor FarGen would suffer much. Greed and ignorance have proven to be dangerous combinations and good substrate to entrepreneurship that is more based on hope than on reality. We should stop believing in magic solutions to the crisis, selling whatever can come to our minds, just because others are willing to put a price on it. It does not matter if those who want to take advantage of our desperation for money are either North American, European or members of the growing economies of the BRICS countries. These are very difficult times and the belief in bubbles has been the cause of the collapse of the global financial sectors. We cannot go on letting the taxes of people be used as part of fantasies and lobby arguments that only buy entrepreneurs and businesses a little more time to survive until they either find other politicians in other countries who will fall for their stories or will simply collapse by their own weight.

 

Lilian Joensen, PhD

Grupo de Reflexión Rural

www.grr.org.ar

 

 

 


 

[6] http://www.vmr.fo/Default.aspx?ID=6855&PID=25941&NewsID=3515    

[7] James P. Evans et al., Deflating the Genomic Bubble. Science 18
 February 2011, 
Vol. 331 no. 6019 pp. 861-862 (http://www.inters.
org/disf/sites/default/files/100%20Genomic_bubble.pdf )

[8] Iceland's Vikings face a long winterI. Islanders must create a new future
after economy built on massive debt falls apart(http://www.guardian.co.uk/
world/2009/feb/09/iceland-economy-credit-crisis)

[9] Fraud investigation rocks Danish University. Nature, January 7th 2011.( http://www.nature.com/news/2011/110107/full/news.2011.703.html )

[24] http://www.hhs.gov/about/FY2012budget/fy2012_nih_online_
performance_appendix-final_revised.pdf

[25] http://www.signonsandiego.com/news/2011/may/09/
illumina-drops-human-sequencing-price-4000/

7 Iceland's Vikings face a long winterI. Islanders must create a new
future after economy built on massive debt falls apart(http://www.guardian.
co.uk/world/2009/feb/09/iceland-economy-credit-crisis