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The Ethics Of Denying Treatment

Occasionally, truth is not only stranger than fiction; it offers more hope.

The film “Still Alice,” like the novel of the same title upon which it was based, centers on a brilliant and accomplished 50-year-old woman who develops early-onset Alzheimer’s disease. It is a genetic condition, and Alice is presented with a 50-50 chance that each of her three children may eventually experience the same deterioration. In the film as in real life, there is no cure and, should any of the children test positive for the genetic defect, presently no hope. “Still Alice,” which drew even more attention after lead actress Julianne Moore won an Oscar for her performance, was widely praised for highlighting the struggles of people affected by early-onset Alzheimer’s and their loved ones.

But while the fictional characters in “Still Alice” must face their genetic destiny, science offers hope to those who suffer the genetic defect but have not yet developed full-blown Alzheimer’s. Advancements in genetic manipulation have raised the possibility of treatments or cures for Alzheimer’s and other genetic conditions, allowing patients to avoid the worst effects. Perhaps even more importantly for some, advances may soon allow carriers of risky genetic markers to avoid passing such risks on to their children.

Gene therapy can broadly be divided into therapeutic techniques that affect somatic, or non-reproductive cells, and those that affect reproductive, or germ cells. Somatic gene therapy has been a focus of research for years, and generally faces no more opposition than any other medical technique. However, it only helps the particular patient undergoing the treatment; any future children would still be at risk.

The second sort of gene therapy, often called “germline modification,” is different. Changes made successfully to reproductive cells or developing embryos could theoretically pass on – or prevent the transmission of – particular genes to children and later descendants. Not only is this sort of therapy possible, the mechanics behind it are not described as terribly complex. The leading technology, called Crispr-Cas9, serves as a sort of search-and-replace function for editing DNA. Jennifer Doudna, a biologist at the University of California-Berkeley who co-discovered the technique, said, “Any scientist with molecular biology skills and knowledge of how to work with [embryos] is going to be able to do this.”

It sounds like a miracle. Yet some in the scientific community and many outside it would ban this treatment, either temporarily or permanently, on the basis of “ethics.” Many of those who oppose such therapies argue that humanity should not play God with its genetic endowment.

Ethics, my... chromosomes. Such arguments are nothing more than thoughtlessness and arrogance, with the side effect of inflicting needless suffering.

Two groups of scientists have called for bans on germline editing. Representatives of an industry group, the Alliance for Regenerative Medicine, published a commentary in Nature magazine recommending a wide moratorium that included not only applications in humans, but even laboratory studies, which they called “dangerous and ethically unacceptable.” A group of biologists writing in the journal Science was more tempered in its recommendation, urging basic research to proceed in an effort to determine “what clinical applications, if any, might in the future be deemed permissible.” Until then, however, they still call for a worldwide moratorium on such clinical applications. Some countries already have legal bans on such therapies; the U.S. does not, though they are subject to approval from the Food and Drug Administration before use in humans, as with other sorts of clinical therapies.

R. Alta Charo, a bioethicist at the University of Wisconsin, told The New York Times that two broad schools of thought apply to modification of the human germline. One group seeks to balance benefit and risk. The other “sets up inherent limits on how much humankind should alter nature.” Scientists who want to hold off clinical applications in favor of more research may simply be especially risk-averse members of the first group. People who wish to ban germline therapy in all circumstances, forever, are clearly members of the second. But their position is not only harmful, it defies logic.

For most of human history, “God’s will” has been used to justify all sorts of suffering and premature death. Every new medical advance, from antibiotics to chemotherapy to organ transplants to fluoridated water, brings along some who will denounce it as playing God. But since anyone, including the self-proclaimed “ethicists,” risked falling victim to the ailments these advances treated, such objections were sooner or later consigned to the fringes that raised them. Most of humanity has benefitted greatly as a result.

Why is the alteration of the deoxyribonucleic acid, commonly known as DNA, that is encoded in living organisms any different? Mankind has manipulated DNA in crops and livestock through all of human history through agriculture and husbandry, yet there is an irrational backlash against performing such alterations in a laboratory to increase food yields and quantities and to reduce the amount of pesticides we need to apply to our fields.

That backlash is bad enough on its own. But to consign millions of future people to preventable suffering and death, or to watch their children inherit diseases that could have been prevented, is the exact opposite of ethics. It’s cruelty of staggering proportions.

Might someone alter their genetic endowment in destructive ways, or for trivial or arguably improper motives? Surely. No technology ever invented has been free of abuse or misuse. Should we outlaw wheels because they can be used by invading armies? Ban cosmetic surgery because people should wear the noses and cheekbones with which they were born? Eliminate cars to prevent motor vehicle deaths?

The sort of genetic manipulation that could stop hereditary Alzheimer’s is years away from implementation, and much further than that from being available to a casual non-medical user. Just because we have the ability to change DNA doesn’t mean we know yet exactly what to change and how to change it. There is room for regulation over what sort of uses will eventually be made available and how they will be administered and funded.

There is no room at all, however, for the argument that a scientific advancement that could bring so much comfort to so many people should be banned altogether because of some misplaced fear of “playing God.” Our genetic endowments belong to us, not to the self-appointed “ethicists” who would tell us what we can do with them.

Larry M. Elkin is the founder and president of Palisades Hudson, and is based out of Palisades Hudson’s Fort Lauderdale, Florida headquarters. He wrote several of the chapters in the firm’s recently updated book, Looking Ahead: Life, Family, Wealth and Business After 55. His contributions include Chapter 1, “Looking Ahead When Youth Is Behind Us,” and Chapter 4, “The Family Business.” Larry was also among the authors of the firm’s book The High Achiever’s Guide To Wealth.

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