Ethics of Genome Editing

Wednesday, Nov. 3, 2021
USCB Hilton Head
 
Gerry Schroeter introduced the topic by listing several disabling genetic conditions that can be relieved by surgery that revises an individual’s gene makeup: cystic fibrosis, Down’s syndrome, sickle cell anemia, muscular dystrophy, inherited blindness. Is it right to perform these kinds of operations? What are their side effects? Does the benefit accrue to the individual only or to society’s greater good?

Neil Funnell posed the question of whether genetic intervention is justified to correct an abnormality in the fetus, in the uterus of a married woman with two children, undergoing an unexpected third pregnancy?     
Her choices:

• Let nature take its course:

• Terminate the pregnancy and try again later;

• Genetic intervention, sometimes effective, but with some risks.

 
Gerry then introduced Dr. Colin Moseley, formerly the chief surgeon at the Shriners Hospital for Children in Los Angeles and a clinical professor at UCLA.
 
Colin began by saying that  one hundred years ago we knew almost nothing about genetics. We knew, of course, that characteristics were inherited and often this inheritance was in recognizable patterns. But how it happened was a mystery. Since then, mostly in our lifetimes, we have observed the unfolding of awesome discoveries: that genetic information is carried by a chemical called DNA, that the structure of DNA is a code for these characteristics; that DNA can replicate exact copies of itself in concert with the division of cells; and that the two cells that merge to form a new being can share and re-distribute the genetic information from both parents.  Once we discussed genetics at the level of the organism; today we discuss it at the level of molecules.  

In spite of these exciting advances, our understanding still faces some huge challenges: 

• First, genes operate at the level of the cell. They control the production of proteins by responding to their immediate circumstances and nothing more.  There is no gene that produces a hair, a finger, or an eyeball.

• Second is the immense size of the system. The DNA in each human cell contains about 3.2 billion base pairs and about 1 billion code letters. In the computer world we know that only 20 bits can convey 1 million messages (2 to the 20th power = 1,000,000), the number of messages that can be conveyed by 50,000 code letters is inconceivable: (21 to the 50,000 power = ???). 

In the last decade we have learned how to design and create DNA for example to produce more effective vaccines more rapidly. In addition  CRISPR - CasX technology enables the editing of existing DNA. It consists of two parts - CAS - X, which can explore DNA to locate a specific gene or code sequence and CRISPR, which can cut the DNA at that location to allow the removal of a gene, perhaps with a substitution of a new gene. It seems that we are now capable of tinkering with the essence of humanity, which raises important and difficult ethical questions:

For the first example: 
An unaltered tomato will deteriorate to the point of being inedible if picked and left unattended or a few days but a gene-edited tomato can be left unattended except for transporting and displaying, with a much longer shelf life.  Considering how such action affects consumers, food producers and food merchants, is it smart or ethical to do that?

The consensus of the audience members who responded was that there is no significant downside.

Second example: 
The single-gene disorders listed above can be corrected by gene editing, in some cases by doing the surgery in the uterus.

Comments and questions from the audience:

• Do we know what we are doing?                                                                     

• We may not know the full range of side effects for many years.

• Some of these diseases are horrific, but in some cases blind people make major contributions to society that they may not have made without the handicap that caused them to focus on a problem.

• What’s the ethical difference between gene intervention and the use of antibiotics and transplants and other medical procedures?

• Are there any risks to patients from gene editing?                                      

•  Any horror stories as a result of the surgery?

Third example: 
Modifying reproductive gene cells causes changes in the offspring of the patients and those changes affect future generations. Should we take the chance that we have impacts on generations not yet born?
 

• One member of the audience said that if such modifications are used for good, the procedures are ethical but if used for bad, they are unethical.

• Another said that if the procedure can be done, it almost certainly will be done somewhere, some time. 

• Colin pointed out that the international scientific community has decided that surgery that has an impact on future generations should be prohibited.

 
Fourth example of ethical dilemmas:
Should genes be edited to modify healthy, normal people to enhance some ability, either mental or physical? For instance, tall people tend to get more attention and in some cases more respect than short people. Should physicians modify genes to produce taller people?

One audience member raised the question of what counts as “normal”?

Colin explained that doctors once were taught to use the Golden Rule, “Do unto others as you would have them do unto you,” as the basis of their decision-making in such cases. They now are taught to do what the patient wants; in other words, if a procedure is legal and a doctor can perform it and sees it as ethical in his or her own mind and a patient wants it, then the doctor should do it.

The fifth and last example: 
Is it right to produce populations with characteristics that we need, in order to supply society with nurses, musicians, soldiers, or honest politicians? 
 
From the audience:

• The potential for abuse with such manipulation outweighs the potential for good outcomes.

• If it is technically possible, somebody will use such procedures.

• All ethical questions and answers vary with circumstances.

• Should we edit genes to try to improve the human race?

• Ethics Society board president Gordon Haist commented that at some point it is essential to think of ethics in light of finding a “fitting response” to unforeseen circumstances.

Suppose climate change sets the world on fire and humans need to find another planet, should we modify genes to produce people who can conduct such a mission?

Thanks to Dr. Moseley for his outstanding presentation and clarification of the Ethics of Genome Editing. The wonderful slides, spaced with five breaks for audience participation, were both unique and well received by our audience.  Thanks also to Betsy Doughtie for both Zooming and recording our session, Andrea Sisino for correlating the audio visual and securing our venue,  and to Fran Bollin for her note-taking and always excellent, comprehensive summary of Dr. Moseley’s presentation.