A new genomic bubble in
construction in the
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
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.
were told some weeks ago, that the
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
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
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
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. Evans et al. say:
Unrealistic expectations and uncritical translation of genetic discoveries may undermine other promising approaches to preventing disease and improving health….
of near-term applications are too often unrealistic and
ultimately counterproductive. From the
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
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, 12.1* and
is supposed to perform the sequencing, is apparently not in a
good financial shape according the information available in
different sites , .
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
Lilian Joensen, PhD
Grupo de Reflexión Rural
P. Evans et al., Deflating the Genomic Bubble. Science 18