Showing posts with label neglected diseases. Show all posts
Showing posts with label neglected diseases. Show all posts

Thursday, August 20, 2009

Francis Collins announces his agenda

There's a report in this week's Nature of Francis Collin's announced agenda for the NIH ("Collins sets out his vision for the NIH", Elie Dolgin, Nature, published online August 18, 2009). Collins has defined five areas of 'special opportunity':

Collins, who headed the National Human Genome Research Institute in Bethesda from 1993 to 2008, made the case that investment in biomedical research creates jobs and offers quick economic returns. Looking ahead, he said that the agency should devote more money to "five areas of special opportunity". First, to applying high-throughput technologies in genomics and nanotechnology to discover the genetic bases of diseases including cancer, autism, diabetes and neurodegenerative disorders. Second, to developing diagnostics, preventative strategies and therapeutic tools through more public–private partnerships. Third, to reining in the costs of health care with comparative-effectiveness research and personalized medicine. Fourth, to expanding research into diseases affecting the developing world. Finally, to increasing budgets and investing in training and peer review to achieve a predictable funding trajectory for the research community.

So, this answers the question we posed here and here about how much emphasis Collins will give to genetics -- it's not a surprise that his first priority is genetics and technology, as his lenses are made of DNA. But, it also answers another question we posed about whether he will also emphasize health issues related to poverty, and apparently neglected diseases are on his agenda as well.

That's a good thing. Francis also tried to reassure those who had raised questions about his religious beliefs. Since he is a master at convincing Congress to give him more (and then more) money, and since he identifies a range of appropriate projects, it seems very unlikely that religion will be any sort of problem or issue with his leadership of NIH.

It's easier to predict now how skewed toward genetics his agenda will be. He is a firm believer in the molecular approach to disease not just that genetic mechanisms are involved in disease--which they surely are, in essentially all except trauma and lightning strikes, but also that natural variation in genotypes is a major factor in variation in individual disease occurrence.

It's this that we think is questionable, especially in regard to the common diseases that are mostly, and manifestly more affected by environments than by genotypes. It's clear that a lot of money will be spent, and we think wasted, on 'personalized genomic medicine' in relation to these disorders. Indeed, he has a book coming out next year on personalized medicine.

Meanwhile, many diseases, and small subsets of almost all diseases, truly are genetic in that the variation hugely increases risk that is only affected by lifestyle factors in minor ways. We think that the best way to invest in genetics is to mount an appropriately genetic assault on these. Hopefully he'll see that that is done.

But, he'll be an effective advocate for the NIH, and one has to wish him well, especially if he works to help implement universal health care.

Wednesday, April 1, 2009

Reasons to support, or to oppose initiatives in science

It should be clear by now that we won't hold our tongues when it comes to editorializing about how money is spent in science. We hope to be constructive rather than destructive critics where we express opposition, as we have in regard to major lobbying for biobanks to bring about the miracle of 'personalized medicine'.

There are at least three basic criteria on which it is fair as well as realistic to judge proposed science projects:

1. Scientific merit: is the proposal justified by the known facts?
2. Social politics: is the project well-justified in terms of promised benefits to society, or primarily just good for the science establishment?
3. Social priorities: when resources are limited, and science is supported by the public, is the proposal justified relative to other things that might be done (or the funds used for something other than research)?

The World Bank, no bastion of liberal politics, is estimating that 200,000 to 400,000 people will die (in Africa alone) as a result of the loss of foreign aid (nutrition, vaccinations, health care, &c) due to the economic crisis the West is visiting upon them (Nicholas Kristoff has an op/ed piece about this in today's New York Times). If this is so, it seems immoral and even socially inexcusable to be gearing up for manned trips to Mars, spending money on 'astrobiology', or spending fortunes on large DNA-based 'personalized medicine' campaigns that will mainly feed the research and pharmaceutical industries -- at least for the foreseeable future, even if they are ultimately as successful as promised. And, even if successful, as long as health care funding remains as inequitable as it is today in the US, it would be mainly the rich who will benefit from having their medicine personalized.

So, we object to this kind of spending on ethical grounds. Even if we believed in the scientific merit of biobanks or voyages to Mars (will cages be brought to Mars, to return Martians to Earth in?), they are not justified in the face of widespread disease and other human problems that could be ameliorated with the same funds.

As to priority, these kinds of projects can hardly be claimed to be the most important problems we should be studying, or the best approaches to studying them. It would be easy to name many more justifiable projects -- starting with more stress on truly genetic diseases, more intense efforts in regard to potential antibiotic resistant infectious diseases, nutritional programs for the poor at home and elsewhere, research on neglected tropical diseases and so on. But these problems don't have constituents with lobbyists and vested interests.

It's inevitable that people will disagree on how their tax money should be spent, and various aspects of self-interest will always be a factor. But, when huge amounts of money are locked up in projects based on demonstrably questionable science, at the expense of issues with more likely payoff and better scientific underpinnings, it's especially frustrating.

And, if history is any guide, the most likely thing is that the Martians will carry some disease that'll wipe us out .... or else they'll die of our diseases as soon as they land, a real waste of money. And they probably won't even speak English (which would anger at least a substantial fraction of theAmerican public that pays for the expedition).