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New Scientific Advances Need Public Policy Governing Use and Abuse

The views expressed are those of the author and do not necessarily reflect the views of ASPA as an organization.

By Richard T. Moore
April 11, 2021

“Italian physician and scientist Luigi Galvani discovered the phenomenon in 1780, when an electrical spark caused a dead frog’s legs to twitch as if it were alive. The finding galvanized the scientists of the day, kicking off decades of experiments into electricity’s ability to revive,” according to CNET Magazine. The real-life scientific experiments of Dr. Galvani are said to have inspired Mary Shelley to write her 1818 horror novel Frankenstein, a tale that in word and movie has horrified many around the world.

More than two hundred years later, science has advanced quite a bit. Instead of creating a person like Frankenstein’s monster from corpses and body parts, modern day scientists have discovered gene-editing. This has demonstrated infinite possibilities for correcting genetic problems, but there is a need for policy to evolve to guide the future use of the science.

In recent years, Jennifer Doudna was the co-recipient, with Emmanuelle Charpentier, of the 2020 Nobel Prize for Chemistry for the discovery of CRISPR, the gene-editing technology. CRISPR is the unwieldy acronym for Clustered Regularly Interspaced Short Palindromic Repeats, which is essentially a natural way of altering or replacing DNA sequences in a cell. It is being tested in food and animals and, in a limited way, to correct or treat genetic defects such as sickle-cell anemia.

Much to Ms. Doudna’s credit, she recognized both the capacity of her discovery for ill, as well as for good. She called for an international conference to discuss the ethics of utilizing the new science of gene-editing. She knew that in more recent times, political forces in Europe wanted to “purify” the population. This belief, at least in part, was a fundamental concept behind the Holocaust, launched by Adolph Hitler in his aim to build a “master race.” A far more positive example would be Captain America of Marvel Comics fame, when, “A 98 pound weakling,” was supposedly injected with, “Super soldier serum,” and became muscular and tall, possessed of amazing strength and agility to fight the Nazi menace in World War II.

One doesn’t need to look back even 75 years to know that people with wealth would want to improve their children’s chances of an elite education. As The Atlantic and numerous other media outlets reported in 2019, “A coast-to-coast FBI probe alleges that a network of celebrities, business executives and other powerful figures is at the center of a massive bribery scheme to secure admission into some of the country’s most elite colleges, according to court documents.” With gene-editing, wealthy parents wouldn’t need to stoop to bribery and fraud, but could help their children be intelligent enough to get admitted to prestigious colleges on their own. Maybe they could even get their health insurance to cover the procedure.

Consider the number of genetic causes of serious disability or illness that could be “cured” or prevented through gene-editing. As the National Cancer Institute has reported, “Although several methods of gene editing have been developed over the years, none has really fit the bill for a quick, easy, and cheap technology. But a game-changer occurred in 2013, when several researchers showed that a gene-editing tool called CRISPR could alter the DNA of human cells like a very precise and easy-to-use pair of scissors.”

Apart from protecting against unethical uses of gene-editing, there are other concerns. CRISPR gene editing technology has promised to revolutionize the treatment of genetic diseases, including Down’s Syndrome. These disorders once were considered unsolvable and incurable. Parents will certainly want to protect their children from these genetic abnormalities, but personalized treatments are likely to be very expensive. Insurance plans are likely to oppose being mandated to cover such treatments. Since those who suffer from genetic conditions are costly to society as well as reduce the individual’s ability to contribute to society at higher levels, shouldn’t society help to support those costs?

Many in society are already concerned that certain groups do not have equal access to care, and economics are clearly a factor limiting the ability of some to obtain treatment. There are also racial and ethnic disparities that need to be addressed. Sickle Cell Anemia afflicts 8% to 10% of African Americans, but can also be present in the genes of other races.

Tay-Sachs Disease affects males and females in equal numbers. Tay-Sachs disease occurs with greater frequency among Jewish people of Ashkenazi descent, i.e. those of Eastern or Central European descent. Approximately one in 30 Ashkenazi Jewish people carries the altered gene for Tay-Sachs disease. In addition, one in 300 individuals of non-Ashkenazi Jewish heritage is a carrier.

The possibilities for finding cures for previously incurable diseases and conditions from widespread diseases such as cancer, to rare diseases that occur in more limited, but nevertheless heart-breaking and expensive scopes, such as birth defects, seems limitless. CRISPR is no longer theoretical and can increasingly be used for good. It apparently even helped in the development of the COVID-19 vaccines. However, it’s use or abuse will need to undergo the same ethical and policy debate that surrounds nuclear power. Policymakers and ethicists have a significant challenge facing them once again.


Author: Richard T. Moore has served in both elective and appointive public office at local, state, and national levels of government. He served for nearly two decades each in the Massachusetts House and Senate, and was chosen as President of the National Conference of State Legislatures in 2010-2011 He is a past president of the Massachusetts Chapter of ASPA and served on the National ASPA Council. He is a member of Dignity Alliance Massachusetts advocating for older adults and people with disabilities. Email: [email protected]

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