External Link - Source: Nature
The example points to a broad problem in research on humans — that informed consent is often not very well informed (see ‘Reading between the lines’). Protections for participants have been cobbled together in the wake of past controversies and have always been difficult to uphold. But they are proving even more problematic in the ‘big data’ era, in which biomedical scientists are gathering more information about more individuals than ever before. Many studies now include the collection of genetic data, and researchers can interrogate those data in a growing number of ways. Several US states, including California, are considering laws that would curtail the way in which researchers, law-enforcement officials and private companies can use a person’s DNA.