For those of us outside of science and medicine who would like to believe that the stereotypical men and women in white coats working in labs, clinical settings and academia work within exacting ethical standards, events in recent years suggest otherwise.
The example of Andrew Wakefield’s self-serving and highly-reimbursed “study” into the MMR vaccine causing not only autism in children but also inflammatory bowel disease that began with the publication of his flawed study in 1998 stands out as a glaring example of both deliberate ethics violations on the part of the researcher and the long-lasting effects on public health policy, and even more of public opinion.
There are other less glaring and perhaps less deliberate instances of research ethics violations that have resulted in flawed research results and therefore flawed research reports.
Two Recent Examples of Misleading or Erroneous Scientific Research
In August 2016, a group of researchers who analyzed the research methods that were used in a study that promoted the benefits of using the medication Celexa in children and teenagers that was first published in the American Journal of Psychiatry in 2004 requested a retraction of the original Celexa study by both the American Psychiatric Association and the American Journal of Psychiatry. The research analysts, who published their findings of study data ignored by the original researchers, influences of Celexa manufacturer, Forest Laboratories, and other ethical irregularities in the May 2016 journal, International Journal of Risk & Safety in Medicine.
What was the big difference between what the original research team reported about the use of Celexa, an antidepressant medication, in children and teens versus what the more recent analysis of the same data revealed? The original research data actually demonstrated there was no difference in the therapeutic effects of Celexa in those populations than did a placebo.
In another recent example of erroneous reporting on scientific research was the report of the PACE study, a large, controlled and peer-reviewed study conducted in the United Kingdom and published in the British medical journal, The Lancet, in 2011, regarding myalgic encephalomyelitis/chronic fatigue syndrome, or MA/CFS.
The original study, which cost $8 million, advised that people with MA/CFS should seek mental health treatment and get more exercise. The study cited a 60 percent chance of improvement in symptoms using either modality, with a 20 percent chance of total recovery.
But in another look at the research data by a second group of researchers – actual MA/CFS patients – data that was only provided after the new researchers obtained a court order requiring the disclosure, revealed through that second look that the chances of improvement of MA/CFS symptoms using both or either psychotherapy or increased physical activity was 10 percent – rather than the 60 percent originally cited – and chances of recovery were nearly non-existent compared with the PACE study’s alleged 20 percent recovery chances.
Dr. David Tuller, a lecturer in public health and journalism at UC Berkeley, has helped the group of MA/CFS patients write up their findings of the flaws in the PACE study, findings that as individuals with real-life experiences in what has helped and not helped their symptoms of chronic fatigue syndrome realized that the recommendations of the study made no sense. What their analysis of the PACE study showed, among other details, was that the researchers changed their assessment methods mid-trial, a move that is contrary to accepted research methods and that may have been precipitated to affect the study outcome.
Researchers Face Funding and Time Constraints
Even the most ethical of scientists and researchers face a double-edged sword of dilemma: Research requires money and lots of it. Perhaps more valuable than money to both researchers and those who fund the various studies is time because it is a resource that can’t be acquired. Studies of data and clinical trials can require years of research, research that sometimes doesn’t produce the kinds of results that the funding sources are seeking – results that will allow them to bring a product to market, steer policies in their direction or otherwise result in profits for the funding source.
If research weren’t so pressured by funding and tie constraints, there’s little doubt there would be less motivation to hedge numbers now and then or to ignore data that doesn’t promote the bottom line. Until something changes at least of those parameters, namely finding funding sources, scientists will continue to be tempted to cheat just a little – or sometimes, a lot – rationalizing that such cheating is necessary and even expected.
Why Does It Matter If Researchers Cheat?
Why should we as non-scientists care if researchers in the fields of science and medicine shade the truth a little bit? Are ethics in research really that important?
Let’s call ethical violation in research what they are: fraud. Fraud is deceit, cheating, breach of confidence. If scientists and medical experts, health care providers, and everyday people cannot rely on the validity of research, what is the point of having research at all?
It may seem a far stretch to consider three examples of scientific research among the legions of studies that have been done to call into question all research, but is it? If it wasn’t for the diligence of others – in the case of Andrew Wakefield’s flawed vaccination research, it was journalist Brian Deer who investigated and exposed the fraud; in the Celexa research, it was other researchers who called the results into question; and in the PACE study, it was chronic fatigue patients who were required to go to court to seek the data they needed – the world may not yet know the truth.
And still, the prestigious medical and scientific journals and associations are reluctant to take action to retract research results that have been shown to be in error or arrived at through dubious methods.
The impact of research fraud can and has had far-reaching effects, as we can still see in the anti-vaccine groups who perpetuate Wakefield’s false cause-and-effect link between the MMR vaccine and what he termed to be “regressive autism.” The original research, debunked in 2011, continues to result in fewer parents getting their children inoculated against illnesses such as measles, mumps and rubella.
The U.S. Food and Drug Administration, the British National Institute for Health and Care Excellence, the U.S. Centers for Disease Control and Prevention and many others, including major health care centers, base their policies and practices in part of emerging research. If the results of that research are fraudulent to any degree, how can the policies and practices derived from them be effective – or even safe?
Freelance writer of 15+ years who is passionate about writing. Liberal Arts and Social Sciences background. Avid reader.Thirty-plus years experience as a registered nurse. Have lived in various parts of the United States, including a recent seven-year stint in Oklahoma City and back home now in Ohio. Writes about U.S. News, Health and Politics for The Daily Voice News. Contact me at [email protected]