Gene Therapy: Public Education
Authors: Inder M. Verma
Journal: Molecular Therapy (2000)

At the end of a presentation to a lay audience, a hesitant listener in the audience raised her hand and asked me: “Dr. Verma, does everyone has DNA?” I am not sure how I responded to this query at the time, but I do recall being quite distressed by this exchange. Students in high school read about DNA, genes, genetics, chromosomes, heredity, and even evolution. The television and newspapers routinely and dutifully report on all the new discoveries and breakthroughs in medicine. The O. J. Simpson trial made PCR a household word (Simpson's lawyer, Johnny Cochran, described PCR to the jury as “molecular Xeroxing”), and DNA fingerprinting is fast becoming a cornerstone of criminal law. Well-informed and otherwise well-heeled individuals often have difficulty in figuring out that genes are in chromosomes, chromosomes are in the nucleus, nuclei are in cells, and cells make an organ. It is all “too complicated,” even without the additional numerical facts that every cell has three billion nucleotides, there are trillions of cells in the body, etc. Pure science moves fast and is driven by facts, whereas society moves slowly, encumbered by opinion, prejudice, faith, and social constraints. The gap between scientific advance and the public's lack of understanding of the incremental nature of scientific progress can be a fertile breeding ground for suspicion. The image created by a national television anchorman of an inadvertent mixing of vials of AIDS virus with “gene therapy viruses” is totally inaccurate and misleading, but it leaves a powerful impression on the unsuspecting audience. Scientists do not have the access or means to counter such sensational journalism, but neither should we become complacent about such inaccurate reporting. We need to educate the public of basic scientific truths so they can begin to differentiate between fact and fiction in popular media coverage. We need to aggressively teach and educate the public of our scientific goals and methods and how they will benefit human health and improve the quality of life. This is hard work and requires talent. It is difficult enough to give a good technical talk, but I believe it is worth the extra effort to explain to laypersons the purpose of your scientific endeavors. I have given talks at rotary clubs, diners clubs, retired professional organizations, philanthropic organizations, high school biology classes, biotech associations, and even at a “high end spa” and am always amazed at the fundamental desire of people to know more about science. Invariably, gene therapy commands an enormous amount of interest because it touches all aspects of human health, from cancer to cardiology and AIDS to Alzheimer's disease. The public is equally interested in the process of science. They are fascinated by the complicated design of our experiments and are intrigued by our patience and perseverance. They sympathize with our failures and always encourage us not to give up. Sharing the process can help lead to the demystification of science and the wider engagement of the public audience. Although people want to receive hope, they also want scientists to be honest. Thus, we should not shy away from informing the public that clinical trials have inherent risks as well as benefits in treating devastating diseases. Gene therapy holds such tremendous promise for human health that we must engage our constituency so that they are better informed of its potential and pitfalls. I urge all practitioners of this science to take every opportunity to explain their scientific endeavors to the lay public in an honest, forthright, and informative manner. I can assure you that it will be a very rewarding experience.