EXECUTIVE SUMMARY
Half of the cancer drugs described with superlative language were not yet approved as safe and effective, and 14% had never been tested in humans, found a recent study.
- Overhyping unproven drugs can mislead patients into thinking these drugs provide a cure.
- Patients might try an unproven drug instead of arranging for needed palliative care.
- In reality, drugs may offer marginal benefits, if any, and have severe side effects.
Half of the cancer drugs described with superlatives such as “breakthrough,” “groundbreaking” and “game-changer” were not yet approved as safe and effective, found a recent study.1 Fourteen percent had never been given to a human being.
“The most surprising aspect of our findings was the several articles that used superlatives to describe drugs that had not even been tested in humans,” says Matthew Abola, a student at Case Western Reserve University’s School of Medicine, and one of the study’s authors. The researchers see the following ethical concerns:
- Overhyping unproven drugs can mislead patients into thinking these drugs are their shot at a cure. “I know if I was a patient with an advanced cancer, I might want to try the new ‘game-changer’ instead of arrange for more palliative-focused care,” says Abola.
- In reality, the drug may offer marginal benefits, if any, and have severe side effects.
- While patients can try experimental drugs, the researchers say this should start in a healthcare setting, with the involvement of a physician.
“Using these superlatives is purely about generating hype — not about a levelheaded discussion of the risks and benefits of a new drug,” says Abola.
Zubin Master, PhD, assistant professor at Albany (NY) Medical College’s Alden March Bioethics Institute, says hype isn’t unique to cancer drugs, and to some extent, is to be expected.
“When every novel technique is first discovered, there’s a fair bit of hype around it,” he says. “Only later do we see the potential development of a product and its ability to be taken into the marketplace.”
Since the late 1990s, people have been predicting that stem cell therapies will be widely available in just a few years. “And all these years later, there are no stem cell therapies,” says Master, adding that overly optimistic timeframes were also predicted for gene therapy and neurotechnologies.
Hype can also cause a rush from research trials to clinical practice. In the late 1990s, gene therapy trials led to the death of an adolescent, and other serious adverse events. “We didn’t know enough about how genes worked. Not until the death of Jesse Gelsinger did the NIH and other authorities say, ‘We need to slow down instead of prematurely rushing translation of the technology,’” says Master.
Another ethical issue involves justice. “We have a limited pot of money,” says Master. “If we hype stem cell research or genetic technologies, we may put all our financial resources into it. We don’t know if some of these technologies will work, at the end of the day.”
In reality, research may be of little practical value for years to come, or might contribute to the overall body of scientific knowledge but never have a direct clinical application. “Even if we don’t get a drug or a novel diagnostic, these are still valuable things to invest in,” says Master.
Master notes that the public’s understanding of science doesn’t typically come from a textbook or taking a biology course. “It comes from the media,” he says. “Hyping science raises people’s expectations and hopes.”3
It’s not just the media that hypes science, however. Scientists are also guilty of the practice. “It’s also scientists who are making these predictions. In the context of stem cell research, many feel scientists are making exaggerated claims in the public press,” says Master. “It’s kind of like lying.”2
Scientists might simply want to showcase their research and stir up interest in what they’re studying, and possibly attract more funding. The marketing of unproven stem cell treatments can be traced back to hype, however.
“Providers are playing on the hype to recruit patients who are suffering from some serious disorders to get these fake therapies that can potentially hurt them and are expensive,” says Master.
During a recent presentation on stem cell tourism, Master raised the issue that hype contributed to development of the industry. A physician commented, “The problem is, when we are asking benefactors to donate millions of dollars, they want to hear some of that hype. If you give it to them 100% straight, you won’t get anything.”
When simplifying things for a lay audience, scientists may wind up saying things that are inaccurate, without realizing the ramifications. “We want scientists to realize that hype may be indirectly contributing to something that is bad for society,” says Master.
In a recent paper, Master argued that communication of science to the lay public should be part and parcel of ethics education.4
“The media is hungry for science,” he says. “Scientists can still talk about the potential of discoveries and predict timelines and the future development of drugs without being over the top.”
REFERENCES
- Abola MV, Prasad V. The use of superlatives in cancer research. JAMA Oncol 2016; 2(1):139-141.
- Caulfield T, Sipp D, Murry CE, et al. Confronting stem cell hype. Science 2016; 352:776-777.
- Master Z, Resnik DB. Hype and public trust in science. Sci Eng Ethics 2013; 19(2):321-335.
- Master Z, McDonald M. Paciulli D, et al. A primer on ethics education for stem cell and biomedical scientists. Current Stem Cell Reports 2016; 2(4):336-348.
SOURCES
- Matthew Abola, School of Medicine, Case Western Reserve University, Cleveland. Email: [email protected].
- Zubin Master, PhD, Assistant Professor, Alden March Bioethics Institute, Albany (NY) Medical College. Phone: (518) 262-1548. Fax: (518) 262-6856. Email: [email protected].
Half of the cancer drugs described with superlatives such as “breakthrough,” “groundbreaking” and “game-changer” were not yet approved as safe and effective, found a recent study.
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