IF YOU鈥橰E not paying for it, you鈥檙e the product, as the saying goes. Use a 鈥渇ree鈥� online service and you are paying with personal data. But when it comes to genomics, you both pay and are the product. Firms charge people who want to understand their genetics 鈥� sometimes on the basis of dubious science 鈥� but also the biotech companies that buy aggregated genetic data to shape their products (鈥�DNA testing firms are cashing in our genes. Should we get a cut?鈥�).
Shouldn鈥檛 donors get a cut? The firms argue there鈥檚 no value in a single DNA sequence, but that research using the aggregated data could benefit everyone, and the tests incentivise donation. So we should let them get on with it.
This call to altruism doesn鈥檛 stand up. We could donate our genomes to medicine through non-profit agencies 鈥� much as with organs. And recent test cases cast doubt that properly informed consent is being obtained. You might also wonder if the biotech firms will cut the price of any drugs that result, given that genome donations could slash their development costs.
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So think carefully if you buy a DNA test. Is it worth paying the price only to become the product in turn?
This article appeared in print under the headline 鈥淏uyer beware鈥�
