'Informed consent" has been an important feature of clinical trials and other research where people are asked to share confidential data about themselves. While informed consent is important to ensure participants understand what they are agreeing to, too narrow a framing of informed consent can be a serious brake on scientific progress.

Most consent defines what can be done with data, and which researchers are allowed to do it. Unfortunately, this generally precludes any re-use of the data in ways not foreseen by the original researchers.

Researchers are generally prevented from sharing data with colleagues, even when they want to, as it is not feasible to go back and ask participants to sign a new agreement that would permit data re-use.

One way round this problem is the development of Portable Legal Consent, a tool to "allow patients to tell the doctors, researchers, and companies that are experimenting on them, that they, the patients own the rights to the data generated from their bodies. When a patient chooses PLC, it's a statement that what the patient desires is for the data to be shared broadly in the public domain, to serve scientific progress as a whole, regardless of the particular individual or institution that makes the breakthrough."

Alpha testers are currently being sought for the PLC process, "a process that will eventually lead to patient control over data, direct engagement of patients in research, and the long term social benefits that come from getting data into the research system."