By Dolli Player and Alicia Matsuura
Leer en español: Bebés a la medida: ¿Una ciencia inmoral o una solución a futuro?
In the early 2000s, genome editing seemed like the answer to parents who carried latent genes that could result in birth defects, future illnesses or poor quality of life for their potential children. But the technology was still unrefined and expensive. It seemed like it was too far off in the future — a science-fiction-inspired solution to real-world problems.
It wasn’t until the discovery of the CRISPR-Cas9 combination in 2013 that the conversation among scientists changed from “it’s impossible” to “should it be possible?”
Before being able to grasp the meaning of the term “designer babies,” it’s important to understand the building blocks of the system that makes it possible.
The scientific process of creating these possible “designer babies” is called genome editing. A genome is present in every living organism, and it encodes all the messages and instructions of that organism’s DNA sequence. This sequence makes up the characteristics and functions of that organism. CRISPR-cas9 and genome editing change those sequences, which in turn changes the message and the output of those cells.
In scientific terms, CRISPR, which stands for clusters of regularly interspaced short palindromic repeats, is a region of DNA that contains repeated sequences of nucleotide repeaters and spacers. Those spacers are a memory bank, holding information from previous attacking DNA and adapting to recognize them in the future. By altering or adding to this “memory bank,” scientists can alter the DNA’s response to any new information it comes across.
Cas-9 is an enzyme that cuts foreign DNA. Combined with CRISPR, this enzyme can alter DNA by cutting a break in a genome’s sequence and forcing it to adapt and adjust with whatever new sequence it is presented with, kind of like “copy and paste” on a cellular level.
Marcy Darnovsky, executive director of the Center for Genetics and Society (CGS), author, and human rights activist, is one of the leading voices in the ethical debate around “designer babies” and genome editing.
CGS was founded in 2001 in response to a wave of discussions on human germline editing, or deliberately changing the genes passed on to children and future generations.
“While we support genetic engineering tools to treat diseases for people who are sick, we should not use those tools to try and modify the gene traits of future human beings and future generations,” Darnovsky said.
Darnovsky argues against gene trait modification for several reasons. One is the potential for harm due to technical limitations and safety concerns. Another concern is the social and ethical issues of these procedures being used only by those who can afford them.
“We live in such a competitive society with staggering levels of inequality and disparity already. I think it makes people anxious about their children’s place in society,” Darnovsky. “It makes you think. If they can get a leg up for their kid by dropping an extra $100,000 at a fertility clinic, there are people who would jump at that chance.”
Darnovsky is concerned about the future possibility of fertility clinics adopting aggressive marketing techniques to promote human germline genome editing to parents.
“It would be available to people who could afford these genetic upgrades for their own children,” Darnovsky said. “They might think, ‘If I can afford it, why shouldn’t I make my kid taller? Have lighter skin or whatever socially desired characteristic there is?”
The perceptions of biological differences and superiority or inferiority are very powerful in societies, according to Darnovsky.
“To me, that’s a key part of the historical underpinnings of racism. We have these stereotypes that are evidence free but have been very powerful and destructive,” Darnovsky said.
According to Dana Carroll, a distinguished biochemistry professor at the University of Utah, the discussions surrounding human germline editing have shifted in the past 15 months alone.
Chinese researcher He Jiankui stunned the world in November 2018 when he announced at a Hong Kong conference that he produced genetically edited babies through modifications introduced by CRISPR.
“A lot of the discussion is now focused on, was it ethical to do that? What would the standards be if you were to go back and modify embryos so children were born with different characteristics?” Carroll said.
Carroll is part of the International Commission on the Clinical Use of Human Germline Genome Editing, which explores the possible clinical uses of human germline genome editing. The commission also published a report on the standards that should be adhered to when undergoing this process. Although the technology is not advanced enough yet, Carroll is concerned about individuals and small groups of people misusing the technology.
“It should be something that countries and societies agree would be OK to do,” Carroll said. “There needs to be a lot of extended discussions and thinking about this in various places.”
The debate on human germline editing is still ongoing; however, great strides are being made in gene editing for curing diseases and alleviating medical conditions. The California Institute of Regenerative Medicine (CIRM) is a stem cell agency that was created shortly after California voters approved California Proposition 71, which supports stem cell research in the state.
Jonathon Thomas serves as the Chairman of the Board for CIRM. He said the ethical considerations on genome editing have been paramount since Proposition 71. CIRM has been strict in adhering to national guidelines and ethical practices affecting the field of human genome editing.
“We’re funding studies that attempt to modify genes to cure disease,” Thomas said. “Our regulations prohibit funding for research where genetically modified embryos are implanted into a uterus for reproductive purposes.”
CIRM has funded a research project that has saved the lives of children with severe combined immunodeficiency (SCID), a disease that causes babies to be born without a working immune system. Children with SCID are quarantined from birth and normally don’t live for more than two years, Thomas said.
The project involved UCLA scientists who developed a technique that takes a functioning blood-forming stem cell through gene editing then places it back in the child’s bone marrow. This creates a bloodstream with normal, functioning immune elements and gives patients the ability to fight off the disease.
The project is one example of how human genome editing can change individuals’ lives for the better.
“These kids who were destined to a terrible, short life, now have immune systems that work,” Thomas said. “They’re back in pre-school or elementary school, and if they get sick, it causes no problems. This is a real example of the use of gene cell therapy to drive a transformative result.”