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Accounting for the Fear Factor

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Self-regulation won’t be enough to appease the public, predicts Michael Yudell

Michael Yudell, MPH, is completing his PhD in the Program in the History and Ethics of Public Health and Medicine at Columbia University. Email him at [email protected]

Genes are in style. From a Rose Garden ceremony to Time magazine covers to a recent Arnold Schwarzenegger film, the double helix seems to be everywhere. Genomics has become so ubiquitous that I keep expecting to find “Mr. Blackwell’s Best and Worst Dressed of the Gene Set” in People magazine.

Yet most Americans remain remarkably unfamiliar with the realities of genomics. In a recent Harris Interactive Poll only 50 percent of Americans surveyed could correctly identify that “DNA is what genes are made up of.” Just 29 percent had even heard of the Human Genome Project. Finally, 40 percent of Americans do not know what genetically modified food is, and 70 percent claim not to have eaten GM food (the vast majority have). Despite media saturation, the public’s understanding of genomics remains incredibly limited.

What role will the popular perception (or lack thereof) of genes, genetics, and genomics play in the advancement of biotechnology? How will a woefully uninformed public react to discoveries that may, in some way, seem threatening? Nearly half of Americans surveyed by Harris Interactive fear that genetic information may be misused in some way.

We need only to look at the GM food debacle in Europe to see how the popular perception and fear of genomic technology can cripple an industry. Is this a risk that US biotechnology is willing to take as the scientific and financial stakes grow? But what can industry really do? After all, biotech companies are in the business of medicine and science, not education.

Genomics presents us with a unique situation. The development of new technologies and the concurrent effluence of data are outpacing our understanding of the biomedical, scientific, and social impact of genomics. There are tremendous moral, cultural, and economic stakes inherent to the genome boom. Some fear the specter of eugenics, while others worry about medical privacy, health insurance, and genetic engineering.

It is not enough to recognize that the public lacks a sophisticated understanding of genomics. Indeed, industry, government, and academia remain unprepared to deal with biotech’s ethical and policy challenges. Even Arthur Caplan, the doyen of American bioethicists, worries that “we have done almost nothing to prepare for the advent of a flood of new genetic information” (Philadelphia Inquirer, April 10, 2000). We need creative solutions to address problems that are not yet evident. So what can we do?

ELSI-sponsored workshops, museum exhibits, and continued media coverage will ultimately increase the public’s understanding of genomics. But these changes will probably come at too slow a pace to keep up with the rapidly advancing technology, and at too slow a pace to prevent some level of public backlash.

To face this challenge, leaders in the biotech industry must recognize that self-regulation may not be appropriate anymore. For biotech to continue to thrive it should embrace some type of regulatory scheme that secures the public’s trust and protects public and environmental safety.

To accomplish this, biotech must work in partnership with government, academic, and public interests to formulate industry-wide standards and regulations that satisfy both public and private needs. A commission or initiative, be it presidential, congressional, or privately funded, must be given a mandate to create these standards for eventual legislative review.

Let’s hope that industry hubris, government inaction, and public ignorance do not derail technologies that are sure to improve the quality of all of our lives. We can continue on a path of progress ony if it is a choice we make together.

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