Classified Human Subjects Research Continues at DOE
A dozen classified programs that involved research on human subjects were underway last year at the Department of Energy.
Human subjects research refers broadly to the collection of scientific data from human subjects. This could involve physical procedures that are performed on the subjects, or simply interviews and other forms of interaction with them.
Little information is publicly available about the latest DOE programs, most of which have opaque, non-descriptive names such as Tristan, Idaho Bailiff and Moose Drool. But a list of the classified programs was released this week under the Freedom of Information Act.
Human subjects research erupted into national controversy 25 years ago with reporting by Eileen Welsome of the Albuquerque Tribune on human radiation experiments that had been conducted by the Atomic Energy Commission, many of which were performed without the consent of the subjects. A presidential advisory committee was convened to document the record and to recommend appropriate policy responses.
In 2016, the Department of Energy issued updated guidelines on human subjects research, which included a requirement to produce a listing of all classified projects involving human subjects. It is that listing that has now been released.
“Research using human subjects provides important medical and scientific benefits to individuals and to society. The need for this research does not, however, outweigh the need to protect individual rights and interests,” according to the 2016 DOE guidance on protection of human subjects in classified research.
An extravagantly horrific example of fictional human subject research was imagined by Lindsay Anderson in his 1973 film O Lucky Man! which captured the zeitgeist for a moment.
This report serves as a landscape assessment and toolbox from which local governments can negotiate an informed position when it comes to the levers available to them and includes a first-of-its kind analysis of eight executed community benefits agreements.
When a hurricane hits, it’s all hands on deck – that goes for federal data, too. Pulling back from our investments in timely, accurate, and accessible public data will only make us less prepared and put us all at greater risk.
This is bigger than a singular elimination of race and ethnicity questions. It could accelerate the second wave of widespread reductions to demographic data, leaving public health officials with even less information to deliver better health outcomes for all Americans.
Soft law was never meant to be a permanent solution. Treating it as one, and letting the sandcastle stand in for the skyscraper indefinitely, is how we end up with a decade of voluntary commitments and no enforceable accountability to show for it.