It might sound like the stuff of science fiction, but the day of tailoring genes is approaching. The question is: who will have access to this technology, and will ethics be ahead of the science?
The revolutionary tool that might make customizing genes possible has a friendly acronym for a complicated term: CRISPR.
CRISPR in a Nutshell
The acronym stands for Clustered Regularly Interspaced Short Palindromic Repeats, but that isn’t very helpful for an average person. CRISPR is a family of DNA sequences that are found within the genomes of primitive organisms like bacteria and archaea. When these sequences are combined with an enzyme called cas-9, CRISPR works like a cut and paste tool for genomes.
The invention of CRISPR, a co-discovery by Berkeley scientist Jennifer Doudna and Broad Institute scientist Feng Zhang, was to genomics what coding was for computing. With the precise, shortcut scissors of CRISPR, genes could be quickly and (relatively) easily manipulated, cutting out undesirable traits and inserting others.
There are endless applications for such genetic engineering, many of them overwhelmingly beneficial. CRISPR shows great promise in terms of immunology and cancer treatment. But, when it comes to human applications, especially involving embryos, the genetic field has been more circumspect and self-policing. That’s because, rather than editing somatic, or non-heritable genes, altering heritable ones means involving the germline; possibly causing genetic problems for future generations that inherit the CRISPR changes.
All it took was one scientist to break the rules.
In late 2018, a Chinese scientist named Jiankui He made the announcement he’d just created the world’s first gene-edited babies, nicknamed “CRISPR babies.” The editing, designed to make the twin girls immune to HIV, might have been well-intentioned. But the action caused an uproar in the scientific ethics community.
Genetic pioneer and NIH director Francis Collins had harsh words for He, telling Stat News that He’s work “represents a deeply disturbing willingness by Dr. He and his team to flout international ethical norms.”
While there might be some wiggle room among scientists to use heritable edits for single-gene mutations like Huntington’s disease (always fatal and devastating) and sickle-cell anemia, there’s no enthusiasm for using CRISPR for manipulating other traits, like height, intelligence or appearance. That smacks of eugenics.
CRISPR is Self-Policed
Although it would seem like governments would be involved in sorting out the ethics of using CRISPR on both the somatic and heritable levels, that’s not the case. The US currently has a ban on using federal funds for embryonic research, but it’s flourishing in private fertility clinics and labs, pretty much operating as the Wild West of IVF. Currently, anyone with tens of thousands of dollars can pay a private IVF clinic to try and implant a handpicked embryo. Add CRISPR technology to the mix, and designer babies for the wealthy might be a reality.
To avoid this Gattaca scenario, the scientists have policed themselves. The AMA Journal of Ethics states:
“Although the National Academies of Sciences, Engineering, and Medicine (NASEM) have recently begun to discuss criteria for ethical germline editing, most professional societies—including the NASEM, the American Society of Human Genetics, the European Society of Human Genetics, and the American College of Medical Genetics and Genomics—currently forbid germline gene editing.”
This forbidding aspect only goes so far, though, as He has let the cat out of the CRISPR. As Stat News put it,
“Rather than being seen as an anomaly, He’s actions should be a reminder of the tensions routinely produced by our long-standing culture of scientific self-governance. There is little preventing other scientists from doing something similar to He’s…”
Another Stat News article, on bioethics at Harvard, pointed out being bigger potential problems with CRISPR besides gene editing embryos.
“For all the passions that germline editing incites, its effects would be small: It requires in vitro fertilization, so few parents would use it (unless reproductive sex goes the way of flip phones). Other applications of CRISPR could be more consequential. One could alter ecosystems. Called “gene drive,” it is a technology for editing the genomes of an organism in a way that causes the change to be inherited by every offspring, contrary to usual inheritance patterns.”
Even If CRISPR Could Cure Diseases, Who Gets It?
Using a tool like CRISPR is potentially part of the personalized wellness trend in which, for a price, your personal genome can be analyzed and then applied, or possibly manipulated, for enhanced health. There are already numerous ways to part with your cash in personalized wellness, like a company in Florida that will bank your immune cells as insurance against certain types of rare cancers (not proven, and probably pointless).
While CRISPR is mostly at the experimental stage, it will command high prices in the consumer market, along the lines of extra IVF embryo screenings that can cost upwards of $30K. Add into that the financial inequities internationally that still break down along racial and social lines, and the idea of a “genetically superior” upper class no longer seems like sci-fi anymore.
In addition to the financial constraints, there’s also the problem with the under-representation of minority groups in research. It’s difficult to pinpoint disease prevention and cures for minority groups if the genomes are unavailable.
“Recent work estimates only 3% of participants in genome-wide association studies (GWAS) published in the GWAS catalogue are of African descent,” the AMA Journal of Ethics explained. “These studies are crucial for understanding associations between genetic variants and disease within specific populations. Without adequate understanding of the range of clinical variants, it will be harder to tailor therapies specifically to minority populations if less is known about their genomic makeup. Consequently, underrepresented minorities will likely miss out on potential gene therapy benefits.”
Plus, there’s inequity worldwide in terms of basic health needs, much less advanced genetic therapy.
“In a world in which there are people who don’t get access to eyeglasses,” Feng Zhang said in the Airmail article, “it’s hard to imagine how we will find a way to have equal access to gene enhancements. Think of what that will do to our species.”
One possibility is that the World Health Organization (WHO) could try to enforce some basic guidelines internationally, but because different countries have different standards and practices, it would have to be flexible. That flexibility, says Peggy Hamburg, chair of the American Association for the Advancement of Science and the co-chair of the WHO’s advisory committee on gene editing, could be a real problem, leading to genetic medical tourism.
“It’s very hard to enforce practices and standards,” Hamburg said to Airmail. “This is not like nuclear weapons, where you can have guards and padlocks to enforce a security regimen.”
Perhaps CRISPR babies are the ultimate example of personalized medicine, complete with all the pitfalls inherent in it. To this point, the AMA Journal of Ethics had a somber warning.
“If the paternalistic emphasis of precision medicine, the essentialism of precision prevention, and the perfectionism of wellness genomics go unnoticed and unchecked, precision health risks becoming merely another step on the road towards a new eugenomics that society could come to regret.”