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17 March 2014

The Genomic Bubble and Strategies Focusing on Patient’s Needs

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In spite of the massive investment in genomics, the results are not only medically and financially scarce, but are also dismissed by society. Far from encouraging their uptake, the scientific narratives deployed by the marketing men which conjure up a world free from disease only generate misgivings. In contrast , when we work from the context of the patient’s need, the marketing narratives are less spectacular but inspire more confidence.

Genomic bubble?

In 2004 Paul Nightingale and Paul Martin wrote a significant article entitled “The myth of the biotech revolution” in which they highlight the plethora of studies and publications in the biotechnology sector, followed by a large number of patents that have failed to produce any significant economic impact because they follow the research and business model of the pharmaceutical industry, which is slow and costly (and, I should add, safe). More recent data suggest that the pattern identified by Nightingale and Martin has not changed.

Let us try to narrow the field somewhat, as biotechnology has endless applications to everything from agriculture to personalized medicine. Perhaps the aspect that has the greatest direct impact on the reader is its application to human health. Herewe have seen three billion dollars of increased public investment result in the human genome project. After more than ten years since its conclusion, we can make a sober assessment of its results. In the view of those who consider the project a success, it has uncovered the genetic basis for a range of pathologies including Huntington’s disease and Marfan’s syndrome. It has also enabled the development of several prenatal diagnoses and, even more importantly, it has brought advances in gene and pharmacogenetic therapies and paved the way to a genuinely predictive medicine.

Opponents to those who sing the praises of genomic research in medicine -citing for example the success of gene therapy against leukemia and blindness, the fact that we now know the genetic factors of many common diseases and that the price of gene sequencing has plummeted- maintain positions ranging from skepticism all the way to considering the project an outright failure. An article by Stephen Halt in Scientific American has no hesitation in branding the genome project as disappointing. The main criticisms focus on the fact that the vast majority of diseases are complex and have a multifactorial origin, involving a large number of genes (for example, over 100 genes are implicated in lipid metabolism), as well as a sizable quantity of interactions between them and with other unknown elements. Thus the effects of gene therapies, pharmacogenomics and predictive medicine have been somewhat modest.

Finally, there is an intermediate position that considers this process as a “genomic bubble” which needs to be deflated. James P. Evans and his colleagues describe in “Deflating the Genomic Bubble” that although there have effectively been undeniable successes in genomics, the disappointments come from its limited clinical usefulness, the relativity of the risk (for example, if the risk of developing Crohn’s disease is one in 1000, how useful is it to reduce it to one in 2000?) and finally, human difficulty in changing lifestyle habits. Knowing that smoking or lack of exercise implies a greater risk of suffering a heart attack does not produce any substantial changes in habits, except when people have medical “scares” or where large amounts of money are spent on publicity, as in the case of prevention campaigns. What’s more, many people do not wish to know their risks and thereafter face a life of anxiety. The same point is made in two articles from MIT: The Human Genome, one Decade later and The Rise and Fall of the Human Genome Project. This latter article particularly highlights the similarities between genomic research and other recent bubbles such as the housing, dotcom and financial bubbles.

In spite of the bubble, Evans is right in stating that genomic research has unquestionably brought considerable benefits -and will continue to do so in the future, and that we certainly are only at the beginning. But as we saw in the case of the Internet in 2000, it did not transform our lives overnight, but instead has been changing our lives a little every day for the last 20 years. It is quite possible that genomics will follow the same pattern

The bubble is also financial

But let us look a little at the bubble phenomenon.  Data from the consulting company Price Waterhouse Coopers corroborate what Nightingale and Martin had already identified earlier: in spite of the good clinical results, the pharmaceutical industry’s models hamper the development of biotechnology firms. In fact, “Out of 1,606 biotechnology investments made between 1986 and 2008, 704 of them generated total or partial losses, whereas only 16 recouped their costs”. According to Evans, the bubble is not only inflated by investors but also by the public purse. And he asks the question “Much morbidity and premature mortality (…) results from smoking, sedentary behavior, and excessive food and alcohol consumption. It is likely that common diseases arising from these behaviors can be reduced by behavioral change, but our knowledge of how to effect such change across populations is limited. Yet, US National Institutes of Health and Department of Energy spending on genomics vastly exceeds the budget for behavioral and social science research”.

How does the biotechnological bubble impact the expectations for genetics?

In this post we have described how in recent years we have seen the creation of a genomic bubble. But who inflates that bubble and how, and what impact does it have on the expectations of health professionals and patients?  This will be the subject of the next post.

Carlos Bezos

Proyect Manager of   IVF-SPAIN and Manager of Recombine Europe

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