After reading the book "Bad Pharma" I developed some concerns about participating in Clinical Tests. The book was written a few years ago, so some of the issues raised may no longer be applicable. But here are ones that caused concern. (These are NOT related to 'medical safety' or the 'ethics of running tests in foreign countries or with populations of people who will not derive any benefits...'
The concerns evolve around sharing of information (results) of tests. The fact that there is not forced "registration" of tests, of the fact that some tests are simply discontinued when desired efficacy is not being established, gag orders and other limitations that have (perhaps in the past) placed on researchers . . . essentially limiting the distribution of test results within the medical community.
It would seem to me that people who, sometimes literally put their lives on the line, should be given assurance that the information derived from a Clinical Test will be widely shared (within and amongst all interested parties in the medical community).
There should be a legal document committing those who are running a clinical test to participants that this information will be shared and test results published.
Finally, should a clinical test establish the efficacy of a particular drug in treating a disease... that trial's participants (including placebo receiving participants) be provided the drug, ongoing.
An actual case in point: Nilotinib (FDA approved for Cancer treatment) was tested on 12 patients with Parkinsons ... with such positive results that it is now in Phase II trial. The original Phase I participants were taken off the drug and resumed their decline in health. Unfortunate for them . . . and science as well ... as the long term effect of the drug which was so beneficial over the brief trial period.... was never tested.