Dear Sir/Madam, we would like you to take part in this research study. We hope this new therapy might prove to be helpful, but research is needed because we are unsure. It is possible it could turn out to be harmful. We are therefore asking you to volunteer, to take this risk, not for your own benefit, but for the benefit of future patients. We thank you very much for your contribution to the greater good, to medicine, and to our understanding of the world.
This is the contract we offer to research participants. We are offering them an unproven therapy that may prove beneficial, but based on history is actually more likely more likely to have no effect or even cause harm. The trade off is a contribution to future patients through improved understanding.
What these individuals are never told is how frequently we break this contract. We allow them to take the risk of an experimental therapy and then we hide the results of the study so that no one can ever benefit. Sometimes the results are hidden for nefarious reasons – the results indicate a therapy is not beneficial, but the researcher makes money from its sale, so the results are purposefully set aside. Other times, the loss of results is more innocent – academics didn’t have time to write them up or the results didn’t seem interesting so journals didn’t want to publish them.
Whatever the reason, unpublished research results represent a breach of the contract made with research participants and is morally reprehensible. Patients are willing to risk their lives for the betterment of medicine and we repay them by hiding results that don’t interest us or affect a company’s bottom line. The resulting void leaves the medical community worse informed than before the research was conducted. I think that this is the largest systemic violation of ethics that exists in medicine today.
How can we fix this? The most important fix is the least likely to be enacted: we should take the responsibility for research completely out of the hands of those with skin in the game. If we care about patients and getting accurate research results, we should never allow pharmaceutical companies to test their own products and then sell us their sciency sounding marketing as if it is valid research. However, this is big business, worth trillions of dollars, and it is unlikely that lowly doctors or patients will be able to create change. This is the realm of politicians and businessmen, not reason and science.
However, there are things you can do as an individual. If you have ever participated in medical research, you should call the researcher and ask where the results are published. If they aren’t published, ask why, and when you can expect to see them. Remind them of their obligation to you as a research participant. You participated specifically so others would benefit, so you have a right to see the results published.
I would also recommend checking out the work done by “AllTrials”. This group is dedicated to transparency in research and ensuring that the results of all trials, past and future, are freely available to be reviewed. As an individual, you can sign their petition here. If you are feeling generous, you can even donate to the cause (I have no affiliation with this group). If you are a member of any patient, nursing, or physician groups, suggest that your organization sign on to show their support.
This is a major issue that is irreparably degrading the quality of current medical science and systematically infringing on the rights of research participants. We must do better.