Delete the troubling data

1 minute read

Misha Angrist turns on the sarcasm filter for a proposal to discard raw data that may trouble research subjects (“If you want to destroy my sweater”):

Pay attention, kids: If it poses an ethical problem, then the obvious thing to do is to just throw it away! Delete it! Burn it! Shred it! Avert your eyes! The patient/research participant/taxpayer wont mind! Trust me!

This is so annoying. It’s cheaper in many contexts to do genome-wide genotyping than assay specific gene variants. So we’ll increasingly see gene testing done on whole-genome platforms of various kinds.

But doctors don’t order clinical tests for whole genomes, they order particular genetic tests. It’s an obvious strategy for a testing company to provide only the ordered results, and either retain or discard further data, in the hopes of additional sales later. The company can upsell its “filtered” service as including additional validation or additional interpretive information of the kind that software can automatically add (for example, short-range phased haplotypes).

Angrist references a suggestion from an academic paper that a subject’s APOE status should be blindly deleted from such results, to avoid the necessity of informing the subject about Alzheimer’s risk.

This is the sort of thing we need to be thinking harder about – how to alert unsuspecting people to minor or moderate risks that will be routine in whole-genome data.