Big Lobbying Week

This past week saw pushes on both sides of the Atlantic for funding for new mega-genomic projects. On the European side, this lobbying is for EU-wide national biobanks, of millions of peoples' records including personal health information and (of course) DNA samples. On the American side, it's to get federal funding for more large-scale genetics. Mass emailings are going out to anyone on potentially relevant science list-serves, asking them to get in touch with the incoming secretary of Health and Human Services. In both cases, the advertized benefit of these huge and expensive genomics projects is a revolutionary 'personalized medicine,' a cause that seems somewhat unsavory given that it will mainly be for wealthy patients, in an era when many millions are without basic living resources including health care.

Personalized medicine is code for a high-technology approach to genetics, to tailor treatment to each individual by predicting their susceptibilities (and potentials?) to suggest molecular interventions. Lifestyle advice is also mentioned, but the real push is genetic, and it's based on a faith in strong genetic determinism, because if individual genotypes don't have high predictive power, the dream of revolutionized medicine won't become a reality. And so this past week was a big one for lobbyists for the belief system that holds (sometimes explicitly, sometimes implicitly) that genes determine everything in life, which often goes hand-in-hand with the belief that anything organized about life has to be due to natural selection (for brevity, we are exaggerating--but not all that much). Inherent in both of these related beliefs is an assumed fundamental inherency about organisms and their traits. Such views have a history of being rationales for various sorts of inequality, but also discrimination, sometimes of the worst kinds. So this isn't just societally neutral science, and it would be naive to believe that such misuses of science are just historical relics.

Commercial interests as well as the self-interests of academics and the bureaucratic portfolios of science funding agencies are transparent in these efforts. An objective never stated publicly as such is to lock up huge amounts of funds, for open-ended time periods. That will certainly keep the vested interests in the pink of professional health for decades.....but will it keep the public that pays for it in the pink of health?

We think the evidence is clearly that it won't, and for several reasons. First, hundreds of diseases really are genetic. Cystic fibrosis and muscular dystrophy are well-known examples. They are actually quite complicated, but at least the genes are known, good targets for research, and tests for at least their major genetic variants with high predictive power are already available: they do not require targeted, sequestered funds nor nationwide biobanks. Secondly, even for complex traits, like cancer or diabetes, the majority of cases are manifestly not genetic in the usual sense. Thirdly, sequestered, targeted research pots are not needed to stimulate research into these common and important diseases: investigators will initiate research proposals to work on those problems that will compete just fine in the peer-reviewed system.

Actually, the scientists organizing and proposing these efforts know very well that they are unlikely to deliver their proposed benefits. They know, too, that when one mega-project ends, self-interest drives the need for a successor. That's the nature of the game these days--and not only in genetics by any means--it is largely what vested interests are all about, and naturally those who will gain are not going to speak against locking up hundreds of millions of funds for countless years to come to fund their playground. And we've not mentioned the many issues of confidentiality and other kinds of abuse of private information.

Of course genes are important. The overall genetic contribution to most biological traits in any species is substantial. That's why embryos can start as single cells and turn into predictable adults, resembling their parents, and so on. Clearly genomes play a major, if not the only, role in this. This is 'molecular' and materialistic causation. There is nothing mystical about it.

But prediction and understanding in science are more than making such statements about a genomic role in biological traits. Living organisms--even individual cells--are highly complex, with countless interacting factors, each variable in the population, and affected by contingency and chance. And there is the 'environment', which from any gene's point of view includes everything else, including the rest of the individual cell's genome. That means that we may not be able to have usefully high individual (personalized) prediction based on any one gene or its variants, or even on any reasonably enumerable set of them. And that is what the evidence, of which there is a huge amount, has clearly shown.

We'll comment at a later date on this lack of individually predictive determinism, and why looking from the 'gene' (itself an increasingly elusive notion these days) on up to the organism and its diseases, is not a cost-effective way to invest health resources. Science is a good thing to invest in, and large health data bases can be, too. But investment should be in proportion to the problems that need solving, not the research curiosities (or interests) of a small group of privileged people called 'scientists'. The history of such glowing promises by geneticists is older than many who will chance across this posting, and while there is a clear and important role for some large-scale genomic resources, biobanks and dreamy promises for gene-based 'personalized medicine' are highly exaggerated, self-interested lobbying tools that need to be recognized as such. When you see ads like the one linked to above, you should ask why would anyone need to pay for such ads? Who has what to gain? If as scientists we just want to keep the large-scale genomic industry in business, at least let's say so honestly and be done with it.

Societally responsible science requires that people speak up about the facts as they are known. The integrity of science depends on truthfulness, and there should be resistance when facts are distorted or dissembled, or exaggerated promises made, out of this kind of self-interest, especially when the target is public funds. At least, that is how we see what is going on in this regard today.