Genomics, privacy and economics

Glyn Moody reports on disquiet around developments in personal genomics:

Good to see some others concerned by the imminent arrival of personal genomics:

In addition, many scientists fear cheap genome sequencing could have other, worrying consequences. Professor Steve Jones of University College London, said: 'If you make your genome public, you are not just revealing information about yourself and what diseases you might be susceptible to, you are also giving away crucial data about the kind of illnesses your children might be prone to. Each of your children gets half your genes, after all. They might not want the world to know about the risks they face and become very unhappy in later life that you went public. Your other relatives might equally be displeased.'

And by its implications for civil liberties:

However, there are other concerns, as Professor Ashburner points out. 'Anyone who commits relatively minor offences can have their DNA taken and analysed. At present, the main use of this process is to create a DNA fingerprint that can be used to identify that individual. But soon we will be able to create an entire genome sequence of that individual from a swab or blood sample. We will end up knowing everything about their genes. In the end, we could have millions of people on a database and know every single genetic secret of each person. That has to be a very worrying prospect.'

We had better think carefully about these issues, for genetic information is, ultimately, just another kind of information, and information wants to be free. Google's investment in a genetics startup is also worth noting. However, given the high value of our personal genetic information, it seems likely to me that we will try to guard and control it much like we do the money in our bank accounts.

One of the biggest strategic uncertainties facing any business, government or organisation these days is that of privacy and its associated economic ramifications:

• how will attitudes towards privacy evolve across society and its constituent demographics?;
• where will each demographic seek to draw lines between high-value, private information and low-value public information?
• what technological, legal, business and social factors could undermine the ability of people to maintain such segmentation between public and private information?
• to what extent will re-aggregation of lots of pieces of low-value information enhance its aggregate value?

No-one knows the answers to these questions yet, but they are among the ones we will need to keep asking ourselves and each other if we are to work together to create a future society we want to live in.