A New Jersey-based startup developed what it claims to be a genetic test capable of predicting a number of common diseases in embryos. The company, called Genomic Predictions, has been approached by dozens of parents-to-be from across the world in hopes of having the start-up help them ‘weed out’ embryos more inclined to develop certain diseases later in life, such as cancer and diabetes. Although Genomic Prediction’s new test is in its infancy, the company has already come under fire by many in the academic and scientific communities, with some depicting the test as both impractical and unethical.
Genomic Predictions has been around for several years now, using various computing technologies, AI and machine learning to research genomes and discover novel ways of predicting phenotypes. “We’ve always thought that one of the best and earliest applications of this would be embryo selection because we can help families have a healthy child,” said Stephen Hsu, the company’s co-founder, in an interview for GEN.
Last month, Genomic Predictions finally unveiled a test which it claims can utilise DNA data to predict the likelihood of embryos from an IVF procedure to develop any of 11 types of diseases. As reported by MIT Review, the test, called LifeView, will measure IVF embryos’ DNA from hundreds of thousands of genetic positions and generate estimates regarding chances of having diseases such as diabetes, heart attacks, and five types of cancer. The test would also alert parents about how likely it is that their child will end up among the shortest 2 per cent of the population or the lowest 2 per cent in intelligence.
Genomic Predictions then hands parents report cards containing the testing results for each embryo so they could implant the ones they deem to be the healthiest out of the batch.
So far, the company reported that 12 clinics around the world—in Nigeria, Peru, Thailand, Taiwan, and the US—will order its new test. The few interested clients are mostly well-off professionals wanting to reduce their child’s risk of having diseases that may run in the family. Genomic Prediction’s first set of clients, for instance, is a gay couple undergoing IVF with a surrogate mother who want to ensure their child won’t have breast cancer. Another couple, who have two children with autism, want their third child to be neuro-typical; something they hope the LifeView test could help them achieve.
For the most part, however, clinics are extremely hesitant about ordering this new test, as many scientific experts and researchers voiced harsh criticism of it. “It is irresponsible to suggest that the science is at the point where we could reliably predict which embryo to select to minimize the risk of disease. The science simply isn’t there yet,” tweeted Graham Coop, a geneticist at the University of California, Davis. A research by The Hebrew University of Jerusalem also concluded that attempting to predict the height and intelligence of an embryo is pretty much a futile attempt at this point in time. Others, such as Santiago Munne, an embryo testing expert and entrepreneur, suggest that the great uncertainty that comes with this type of testing would be off-putting for many doctors and client as well as a source for potential disappointment.
And let’s not forget about the immense psychological strain such a test can place on children who find out they’ve been ‘selected’ out of a pool of embryos in order to be healthy. What if they do end up developing one of these diseases after all this money had been spent?
While a parent’s urge to do all in their power to prevent their child from being ill is understandable, this genetic selection process sets us on a very slippery slope. It seems that endeavours such as LifeView constitute a mere hop, skip and a jump away from genetically editing babies, and cater to our growing appetite to design what we perceive to be the ‘perfect human’. Naturally, we should support the scientific community’s efforts to find cures and solutions to prevent terrible diseases, but is ‘phenotyping’ the answer? This approach all but ignores the slew of external and environmental factors that heavily impact someone’s chances of developing such diseases, including diet, lifestyle, stress, and someone’s mental state. It could be argued that no less attention should be placed on tackling the latter, as opposed to try and manufacture a ‘flawless’ human being.
So far, tests like LifeView appeal only to couples using IVF, a process that is long, uncertain, invasive and prohibitively expensive. Some at Genomic Prediction, however, contend that IVF will be “the future”, claiming that even fertile couples would choose to undergo the process in order to reduce the chances of disease in their children. As such technologies proliferate, we must remain critical and alert of their application and the direction in which it takes our society. Crafting the ‘perfect’ human and labouring to prevent any flaws in our children could cost us a great deal. Much more than an IVF treatment.
Chinese scientist He Jiankui has rattled the international scientific community last week when he announced that he has made the world’s first genetically edited babies, while speaking at an international gene editing summit in Hong Kong. What He claimed he has managed to do is use gene editing technique CRISPR, which is a set of DNA sequences used to detect and destroy DNA from viruses, in order to immunize two infants against HIV.
Not only were He’s statements regarding the success of his experiment misleading, but he acted in blunt defiance of internationally accepted scientific norms and ethics. As comments from scientists and researchers from throughout the world regarding this highly disturbing incident overflow, it is important to reflect on He’s actions in order to figure out what exactly went wrong, and whether similar cases in the future can be prevented.
In his experiment, He tested couples going into in vitro treatment and in which one of the partners had AIDS. He claimed that through genetic editing he will attempt to inoculate the embryos against the virus. The case which he regarded a success was that of two twins named Nana and Lulu, whose dad was HIV positive. Focusing on a gene called CCR5, which is used by the HIV virus as a gateway to infiltrate into the body, He sought to remove cells from the embryos, deactivate the CCR5 using CRISPR, and then re-insert them into the body.
This technique has been previously used by scientists studying the cells of patients suffering from the disease in order to create a vaccine for HIV. Yet, neither Nana and Lulu were carriers of the virus, which means that He took perfectly healthy cells out of the infants’ bodies, altered them, and injected them back in. And so not only was He attempting to cure a nonexisting medical need, but by messing with the girl’s genetic makeup He increased their risk to contract a number of other diseases, such as the West Nile. It remains unknown what the long-term effects of He’s experiment will be for Nana and Lulu, as He’s desired outcome (creating a minor alteration in their CCR5 genes) did not pan out as planned, leaving the girl with a CCR5 mutation unseen previously by scientists.
Furthermore, He’s experiment was conducted in complete contravention of international scientific consensus. Both in 2015 and 2017, the U.S. National Academies of Sciences, Engineering, and Medicine iterated that gene-editing of human embryos should not be executed hastily. In its 2015 release, the academies’ report stated that in the case of gene-editing, “there is a need for caution… rigorous oversight… maximum transparency,” as well as an “absence of reasonable alternatives.” The report finally concluded that much more research needs to be done before this technique is to be used on humans.
Alas, He didn’t adhere to any of these instructions and limitations. He did not inform The Southern University of Science and Technology, to which he belonged, about the experiment, and had lied about receiving the ethical approval of Shenzhen Harmonicare hospital. When He informed a few of his colleagues and fellow researchers about his intended experiment, the vast majority discouraged him from conducting it, claiming that such a step would be extremely unethical and irresponsible, particularly since the effect of CRISPR is still widely unknown to the scientific community and that extensive research must first be done on animals before it can be used to alter human genes. He ignored his colleagues’ pleas and went on to experiment with human beings.
Finally, He failed to properly inform his patients about what they were getting themselves into; presenting the research as an attempt to develop an HIV vaccine, He did not include in the consent form clear and understandable information about CRISPR and gene-editing, and instead drew up a contract that primarily removes any liability on his part should any unexpected or adverse side effects arise due to the experiment.
He’s whereabouts have been unknown for days, and it remains unclear whether he excused himself from the public eye or has been detained for his actions. Nevertheless, while the uproar about He’s experiment echoes throughout the international scientific community, there is no guarantee that such unscrupulous actions won’t repeat themselves in the future.
Presently, there is no international scientific body that monitors clinical trials and experiments. It is true that individual governments may get involved and crack down on wackos like He, but as seen in this case, they don’t have the resources to effectively defend the public from every scientist who decides to engage in unfavourable testing, especially since when it comes to science it becomes all the more difficult to determine where the line lies between innovative and unlawful.