IMPACT COMMUNICATION
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AND INNOVATION
In late October, MIT Technology Review published the article Designer babies aren’t futuristic. They’re already here with an allegory that invited reflection on the impacts and potential of being able to edit a fetus's genetic code to prevent certain parental traits from being passed on to their children. By presenting the story of a character named Matthew, who discovers he has a type of dystonia—a condition that causes the body's muscles to contract uncontrollably—the article written by Laura Hercher leads us to think about how this type of hereditary condition could be avoided with editing techniques like CRISPR.
Faced with the desire to have children, Matthew and his wife, Olivia, sought genetic counseling (yes, this is a health service already provided by professionals such as biologists, doctors, or even pharmacists) to check the chances of their children inheriting this condition. Faced with a 30% risk, the couple ended up finding the alternative of in-vitro fertilization, where embryos would be tested in a lab to have their genetic code evaluated even before implantation. The idea was to select embryos that did not have Matthew's dysfunction.
The problem is that this was not a cheap alternative: in-vitro fertilization costs over $20,000, and each embryo test costs another $10,000. Furthermore, it would require two weeks of ovarian stimulation and egg retrieval. It wasn't the ideal scenario for Olivia, who wanted to become a mother, but not in that way. And although Matthew and Olivia were not using a technique to edit an embryo's genes, the very act of selecting an embryo with desirable characteristics (in this case, the absence of the muscle dysfunction) is, to some extent, a technique for creating designer babies—that is, a new generation of "enhanced" people.
This Sunday, however, the same outlet, Technology Review, published an exclusive report that Chinese scientists are already creating babies whose genetic code has been altered by the CRISPR technique. In reality, this human genetic code editing test had already begun in China in 2015, which at the time also sparked controversy over the ethical issues involved in the procedure.
However, since then, not only has the topic become more popularized, but the CRISPR tool itself has also begun to be considered for other applications. If, at that time, the tests served to support a hypothesis, a theoretical possibility of editing human embryos, now two medical documents published by Chinese professionals indicate that there is already recruitment of couples interested in cooperating in the creation of genetically modified babies. In this case, the focus is on eliminating the CCR5 gene so that the children are born resistant to HIV, smallpox, and cholera.
As in the case of the story told in the first article from October, the editing of these embryos would take place in a laboratory before insemination into a woman's uterus. When asked if this test had been successful and resulted in a birth, the scientist behind these tests, He Jiankui, did not comment. But the published data show that the tests were performed on 24-week-old fetuses, though there is no information on whether these children were born or not.
What the news agency Associated Press reported later, however, is that the scientist eventually declared that one of the couples who participated in the test had their twin daughters born this November, although this data has not been independently confirmed. In any case, a promotional video about the experiment was also recently released.
Despite being a major medical and scientific breakthrough, the birth of genetically modified children raises highly controversial ethical questions. While some argue that certain conditions can be treated with medication, others believe that this type of technique and practice could lead to edits that generate organismal enhancement, thus creating a new form of eugenics.
In a document published by He and his team last year, the scientist declared that, in this global context of competitiveness in gene-editing applications, they want to be at the forefront. In other words, what these researchers are aiming for is to surpass the invention of in-vitro fertilization, which resulted in a 2010 Nobel Prize, and thus create a new kind of space race between the United States and now China.
Interestingly, this news also broke very close to the date of the Second International Summit on Human Genome Editing. At this event, researchers and experts from around the world will meet in Hong Kong to discuss whether we should start editing our genetic code and, if so, how that would happen. This type of discussion, however, also served as fuel for the tests conducted by He alongside a team of elite biologists brought back from the United States to China as part of the Thousand Talents Plan —a recruitment program for innovation talent interested in working in China.
While the side effects of editing a person's genes remain unknown, the other controversy surrounding this technology is that these changes will continue to be inherited by future generations, which could eventually affect the entire genetic chain of the human race. "We have never done anything that would change the genes of human beings, and we have never done anything that will have effects that will last for generations," stated David Baltimore, a biologist and former president of the California Institute of Technology.
But beyond academia and large laboratories, this topic has also been brought into public debate, for example, with a survey conducted by Sun Yat-Sen University, which found a large number of people supporting human gene editing, with some of the respondents even being HIV positive. More than 60% of respondents also supported the legalization of gene-edited children if the goal is to treat or prevent diseases. But although this study was conducted in China, similar results were also found in a survey carried out by the Pew Research Centerin the United States.
The point is that by eliminating a genetic trait that makes children immune to diseases like HIV, we are not performing a treatment, but rather an enhancement of human biology. Given that these embryos do not have the virus, editing them to become immune would be a way of creating a health advantage, much like how existing vaccines work.
What He stated on his WeChat social media profile, however, is that his research will be focused specifically on the treatment of diseases and medical conditions, but never on enhancements like increasing IQ. Given the growing number of Chinese people infected with the HIV virus, tests like this may result in even greater acceptance. On the other hand, this type of decision could also have an effect on the anti-vaccine movement which, as a consequence, has brought back diseases that were once eradicated or controlled.
To understand more about the ethical issues of human gene editing, science fiction works like the film Gattaca raise the question of how non-edited children might be left behind in a society where eugenics defines their destiny and social standing, in a style similar to the castes in Brave New World. Also Blade Runner, especially the sequel Blade Runner 2049reflects on replicants as genetically modified human beings created to serve as more efficient slaves and laborers, and who are therefore treated as less than human by those who have not undergone genetic editing. They are two sides of the same coin and two possible social consequences of such technology, which are already being explored within the realm of fiction.
