Informed consent is no longer serving its purpose, and it's creating more confusion than it is clearing up, says Nature News' Erika Check Hayden. For example, when 23andMe announced it had patented a method to predict the risk of Parkinson's disease, many customers were unhappy, saying they didn't remember consenting to that. In fact, Hayden says, that is spelled out in the informed consent form and terms of service 23andMe sends to its customers, but "the example points to a broad problem in research on humans — that informed consent is often not very well informed."
There are, however, some solutions under consideration, Hayden adds. The BioVU databank at Vanderbilt University Medical Center allows patients to opt out of having their data used in research, rather than asking patients for permission to use their data, Hayden says. Other researchers have turned to very broad consent forms that ask for permission to use participants' data in a variety of studies. Yet another solution could be what the US project Consent to Research calls "radical honesty," which allows participants to upload their own data to a variety of researchers, strips their personal information out, and also requires them to go through a rigorous consent process, then allows for the data to be widely distributed, Hayden says.