Spencer Phillips Hey, Ph.D
Faculty and Co-Director of Research Ethics, Harvard Center for Bioethics
Over the past 50 years, clinical trials have transformed healthcare. Most of the incredible advances we’ve seen in medical treatments for cardiovascular disease, cancer, HIV, and many other conditions have all come about because of clinical trials.
Even if you don’t take any medications or have never participated in a trial, you almost certainly know someone who has benefitted from the fruits of these experiments. Yet most people still don’t know much about the clinical trial enterprise.
In fact, most people who could benefit from participating in a trial aren’t even aware the trial exists. Even those who do know about clinical trials may not realize just how many experiments are going on all the time.
According to ClinicalTrials.gov, the U.S. National Library of Medicine’s clinical trial registration platform, there are more than 54,000 trials actively recruiting participants right now. If we conservatively estimate the average trial costs around $5 million dollars, this translates into roughly $270 billion dollars that is currently invested in testing experimental treatments on human beings.
While that financial investment is considerable, it is equally important to recognize the human investment: No trials can be completed, and no new treatments can be discovered unless there are patients willing to enroll and expose themselves to the risks of experimental treatments.
Trial participation is a brave and socially important thing to do. For some, it represents the last chance at a possible cure and a final sacrifice they make for the benefit of future patients.
To appropriately honor that sacrifice and reap the benefits for future patients, it is essential that the results of clinical trials are widely shared. Unfortunately, many trial results are never shared or published — and this not only fails to show respect for the participants who put their bodies on the line, it also makes duplicative or unnecessary studies more likely.
Thankfully, this lack of transparency around trials and their results is starting to change. There are new regulations in place that now require investigators to post their results to ClinicalTrials.gov.
There is a growing number of academic research teams, like METRICS at Stanford University or STREAM at McGill University, working to enhance transparency around the clinical trial enterprise. There is also now an array of private ventures interested in helping to better coordinate clinical trials, or help patients who are interested in participating in research, to find the trials that are right for them.
In addition to transparency, I believe the world of clinical trials can be more comprehensible and tangible for the average person. However complicated the underlying biology or technology is, a clinical trial is fundamentally just a test of whether something works, and new treatments are developed by running them through a series of these tests.
In the future I see, all of these tests — these tens of thousands of stories about science and medicine that are going on all at once — will be accessible and understandable. This will more properly honor the sacrifice made by the trial participants and help to make us all more aware, and feel more a part of this research enterprise that affects all of our lives.
Spencer Phillips Hey, Ph.D, Faculty and Co-Director of Research Ethics, Harvard Center for Bioethics, [email protected]