Genetic Progress: What’s Not to Love?

By Daniel Callahan

While there are many candidates for America’s list of core historical values, scientific progress would be near the top of all lists. It is the closest thing we have to a secular religion—a creed that says life can and should always get better. There is no end of possibilities about what has been called the “endless frontier” of scientific research.

I am ambivalent about that faith and wary of some of the hopes. On the positive side, at age 85, I am alive because of medical progress: vaccinations, antibiotics, life-saving heart surgery and assorted miraculous drugs. But my skeptical side was nourished early on: at age 15 I recall—and can never forget—the dropping of that incredible model of progress in physics, the atom bomb. It ended a devastating war but left human life worse off for the future, stuck with knowledge of how to build such bombs, and nuclear proliferation to spread them around.

When Progress Sours

For the past three years I have been engrossed in trying to understand why some five global crises I call the five horsemen—global warming, water and food shortages, chronic disease and obesity—all have become worse, not better. Why that outcome, and such slight success, despite billions of dollars spent over the course of at least 50 years? What is going wrong with all those efforts?

The explanatory thread I found, hardly noticed, is what I call sweet milk turning sour: what began as beneficial progress created unforeseen harms as it moved forward. The much sought after and achieved industrial growth has given us global warming. More food of a cheaper and easily available tasty kind brings obesity, just as longer lives from medical advances give us hazardous population growth and the chronic diseases of aging societies—in rich and poor countries alike. What we have yet to learn is how to stop, and turn around, the progress when it starts going sour.

We are now well into what may be the most momentous scientific progress of our era: the development of genetic understanding and its clinical applications, with the mapping of the human genome in 2000 as a key turning point. Sugarplums are surely dancing in the heads of genetic researchers and those in the medical community, as well as tempting a wide range of industries seeing profit in the new knowledge. There is faith and hope on the utopian fringe—not only to cure disease but also to change the way we live out our lives.

I have four hesitations. The first was summed up effectively by some Norwegian health policy researchers who have acutely identified what they call the “P4 Systems and the Medicalization of Health and Life Itself.” “P4” stands for medicine that is “predictive” (determining health risks); “preventive” (stopping disease from occurring); “personalized” (tailored to individual variations); and “participatory” (making patients “the agents driving the revolution”). Genetic progress has been the dominant part of this development.

The “revolution” is called “holistic,” putting all of life, psychologically and bodily, in the medical domain. This may seem fanciful but one need only read daily news stories to note an obsession with health. The old joke that “a well patient is one who has not been well diagnosed” is evergreen. Genetic screening will ferret out everything that can go wrong with you. Will that kind of knowledge make us happier?

Research: A Pandora’s Box

My second hesitation comes from the benefit of research freedom. That freedom allows genetic research to go on quietly with no public knowledge that it is even taking place. It is up to the researchers to decide whether or not to let us know what they’re up to. And we are open to being blindsided.

The third hesitation stems from the second. Once introduced, new research results or technologies can rarely be undone: we are stuck with them. We will not be able to undo the potential harm of newborn children being genetically screened for dozens of lifetime future health risks, leaving a cloud hanging over their lives. We should know by now that new screening technologies typically have been introduced as optional, a matter of free choice, but sooner or later almost invariably become socially and legally mandatory.

My fourth hesitation is about an almost total absence of any serious speculation or research on a basic question: What are the likely or possible harms of the success of visionary utopian genetic research? Bystanders like me can have our say, but there is no industry investment in such studies and, save for rare events like the recent moratorium on CRISPR-Cas-9 germ-line research set by some its leaders, the question remains relatively unexplored.

James D. Watson set the standard in a 1970s genetic research debate when he said worries about harms should not be allowed to stop genetic research. I doubt they will for long. I can only hope that the siren song of lives to be saved and important knowledge to be gained—probably true enough—will not drown out the equally potent message of our recent history: the faith and hope of progress has some dark shadows, ignored at our peril. 

Daniel Callahan is cofounder of The Hastings Center, Garrison, NY, and author of The Five Horsemen of the Modern World: Climate, Food, Water, Disease, and Obesity (New York: Columbia University Press, May 2016).

Editor’s Note: This article appears in the May/June 2016 issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy. ASA members receive Aging Today as a member benefit; non-members may purchase subscriptions at our online store or Join ASA.