Spying scandals jeopardise the genomic revolution

FT

July 31, 2013 6:54 pm

By Gillian Tett

Scientists could learn a good deal from comparing the genomes of thousands

There are not many areas of the economy where costs are one-millionth of what they were a decade ago. Biomedical research, however, is one of them. A decade ago, when scientists first managed to sequence the human genome, the cost of performing that magic was about $3bn per person. These days, however, it has plunged to a mere $3,000 – and is falling further – as scientists take advantage of recent breakthroughs to “skim read” genetic patterns more efficiently and cheaply than ever.

That diminished price has one big implication: it is now possible for scientists to compare the genomic sequence of thousands of people and thus spot patterns of diseases that range from cancer to schizophrenia. Or as Eric Lander, a professor of biology at Massachusetts Institute of Technology, told a conference last month in Aspen: “I don’t know how many million-fold improvements we have seen in a decade, but that is what we are living through in biomedicine. Amazing things are starting to happen now.”

So far, so heartwarming; or so it might seem. After all, if scientists can understand the architecture of cancers, this should help them find better cures. No surprise, then, that investor interest in biomedicine is rising after several years of neglect. Indeed, the money raised through biomedical companies’ initial public offerings has jumped to $1.7bn this year, the highest level since 2000.

Sadly there is a catch; at least two challenges threaten to stop this new genomic revolution in its tracks. The first is an obvious one: as a fiscal squeeze bites in the western world, research budgets are being slashed for biomedicine and much else. This matters because even though the cost of sequencing the genome has plunged, the costs of other types of medical research remain high.

The second issue is more subtle: one consequence of the wave of recent cyber surveillance scandals is that voters are becoming more nervous about privacy. That is affecting not just online communication; it could also undermine scientists’ efforts to collect a big enough pool of genomic data to do their research.

The issue at stake revolves around the application of data-harvesting techniques to medicine. In the first phase of the genome-sequencing revolution, researchers gathered genetic data, one person at a time, because of the great expense of sequencing. Today, by contrast, medical researchers are trying to track the architecture of diseases by comparing the genomic sequence of entire populations. If they want to research schizophrenia, for example, they typically need information on tens of thousands – if not hundreds of thousands – of humans, ideally matched against some of their health records, too.

But one big obstacle to this is the silo curse: existing information is held in different, Balkanised data banks. Another is that some individuals – and politicians – feel nervous about handing personal genomic information to governments or companies when they do not know how it will be used. “There is no scientific reason why we can’t [do big data] but there are legal issues,” observes Prof Lander. Or, more accurately, there is a policy quagmire that is growing more intractable.

Is there a solution? Researchers are tossing out ideas. John Bell and Alastair Buchan, professors at Oxford university, are calling for the creation of non-profit entities that would store genetic data on an anonymous basis for public research, akin to a library. Since it would lie outside the grasp of government and corporate interests, they hope that this system could foster public trust. Even before this, Britain’s National Health Service is quietly drawing up plans to create its own genome data bank on 100,000 people. Separately, international scientists are pushing cross-border initiatives to break down data silos.

And Prof Lander himself is promoting another idea: he wants to start a new “people’s movement”, which would encourage individuals seeking medical help to sign a “count me in” pledge, comparable to the organ donor campaign. This would enable patients’ genes to be sequenced for research on an anonymous basis. This campaign has won some victories. Two months ago, the US Supreme Court ruled that the human genome could not be patented (unless in synthetic form), which should make it easier to gather data. But as the campaign gains pace, the sense of controversy is spreading too. Little wonder, perhaps. After all, as Genewatch, a non-profit lobbying group, points out, there has hitherto been precious little public debate about all this, not least because the issue of genomic sequencing is poorly understood. Given this, groups such as Genewatch want to stop the UK government’s plans to create a 100,000-person data bank, since they argue this will contravene human rights laws. “Anonymisation of whole genomes linked to medical records is impossible,” insists Helen Wallace of Genewatch.

What is clear is that more public debate is needed. And an excellent place to start might be with Prof Lander’s call for a people’s movement. It is an idea that can be easily grasped – not just by scientists and investors but, most importantly, by the public, too.

gillian.tett@ft.com