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Thursday, March 7, 2019

Ensuring Genetic Perfection

What is genetic perfection? When are gene edits too much? How many flaws will medicine allow until we achieve an acceptable amount of editing human DNA? Eighty thousand genes spread among twenty six hominid chromosomes complicate our search for the answers to these questions.

This month a new world committee established by the World Health Organization will be meeting to establish more guidelines after the first Chinese gene edits on baby twins. The first test tube baby was produced in 1978. Just as people were shocked and afraid of the new technology then, similar reactions are happening now. Mankind is discovering more about the creation and editing of life. As in many areas of our rapidly changing world, we must take the time to analyze when and how some steps forward have the possibility of morphing into steps backward. Cellular phone usage is an example where technology can be more addictive than smoking and be used for grandiose positive world change at the same time. The usage and ultimate consequences of gene editing are a double edged sword analogous to cell phone usage--both having favorable and unfavorable outcomes.

First, mothers' experience with their gene-edited babies is sure to be full of anguish. Gene edits mock the very DNA of the parents who create their children. The simple joys of differences in human experience may be replaced by devastating sorrow if their babies are not "perfect". Speculate on what perfection is and how boring the world would be if we were to rid humanity of our so-called flaws. In fact, flaws nearly dominate many of the greatest men who have ever lived: Abraham Lincoln's marfan syndrome, Stephen Hawkins' amyotrophic lateral sclerosis, the alleged handicaps of Albert Einstein, Isaac Newton's and Alex Honnold's probable aspergers, etc. Variation often make life exciting. Mankind learns to become compassionate towards others who hold contrasting views. My son's perspective and value of life has more meaning when he socializes with his cousin. Interacting with this little girl, who has little use of her legs teaches him patience and kindness to those who are different than himself. It teaches him gratitude without even saying a word. How else can these priceless lessons be learned? Are we taking away from the depth of human experience by taking away genetic flaws?

Secondly, let's explore the idea of using medical technology to correct genetic flaws.  In-vitro fertilization and genetic makeup testing give hope to mothers dealing with infertility or who want to choose not to pass on certain genes. Admittedly, this idea may be difficult for one who has not experienced this circumstance, but not for a mother raising a child with health problems and development delays. The available technology is comforting. What can be wrong with offering hope? Professor Arthur Miller says, the technology is way in advance of legal understanding. This also leads to the recent law passed in New York legalizing abortions up to forty weeks. What are the ramifications of this law for a mother carrying what she might consider to be a genetically flawed fetus? Our family experienced rays of hope when after two stem cell transplants we had the option of trying a t-cell therapy using gene-edits in t-cells in hopes of eradicating blood cancer cells.

Finally, every step in genetic research is bold and full of unknown implications. Test-tube babies have been more widely accepted and used for in-vitro fertilization, and have provided hope for infertility issues. Will editing human DNA provide more hope? Falling down the medical rabbit hole allows us to admit that medical remedies are sometimes beyond our understanding in the field of bioethics and the law. I attended the 20th annual conference of the American Society for Bioethics and Humanities where one of the major legal addresses included reproduction and the assisted reproductive technologies and issues concerning vulnerable population including individuals with disabilities by Paul A. Lombardo, PhD, JD. The theme for the symposium was, "The Future is Now" mimicking the font from the well-known film "Back to the Future". Gene-editing is a type of time travel where we are predicting, even controlling, what will happen in the future. In some ways this is an appealing goal to obtain, but we must be judicious in our perspective of traits allowed and taken in life.


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