The Sci-Fi Baby: An exposé of in utero genetic editingFeatured
When we are asked to reflect upon the future of science and technology, we tend to conjure images of time machines or robots that resemble humans. However, the next chapter of biotechnology may emerge in the most unexpected place: a mother’s womb. This novel tool in biotechnology threatens to marginalize the mother of a child, disregarding her procreating ability.In utero gene editing is a novel phenomenon that has sparked discussions within the scientific and technical community. Although a newly developing field, in the past few years, genetic editing has been used to successfully treat heritable metabolic conditions that surface at the fetal level in utero. In July 2018, an international study was released by researchers who reported their experiments in correcting a fatal brain disorder in mice prior to their birth. The mice used presented a mutation in their GBA gene, which is responsible for producing enzymes that break down glucocerebroside, a glycolipid. Without the transcription of GBA, high levels of glucocerebroside build up in the brain, resulting in irreversible brain damage. If this gene does not function correctly, a newborn mouse will die within about two weeks of its birth. During their experiment, the researchers injected a vector (in the form of a virus) that contained GBA into the brains of fetal mice within the gestational period. These transformed fetuses were born normally and survived past two weeks without any symptoms associated with glucocerebroside buildup. Taking a closer look at this mouse brain encephalopathy from a pathological viewpoint, it is evident that this condition mirrors Gaucher’s disease, a neurological and genetic disorder that results in the accumulation of glucocerebroside in human brains. Due to an influx of studies in the past few years suggesting that gene editing is viable, a common treatment for fatal genetic diseases spotted in utero has been to alter the genetic sequence that codes for the absence of a protein. Although this treatment has been proven to be safe and resembles medical procedures such as amniocentesis, a pertinent ethical question it imposes is the safety of the mother. How will the mother be affected by an injection that alters the fetus? Is there a chance that the vector or the products of a malfunctioning gene could poison the mother by resulting in a deleterious immune reaction? Surprisingly, although women are the central recipients of prenatal gene editing, they remain a mitigated population when it comes to public health and pathology. In China (and in many other nations), where the birth of twin girls whose genomes were edited using CRISPR was publicized as a scientific breakthrough, there are little to no conversations with expecting mothers that exist to ensure they are not subjected to any medical risk while promoting the proliferation of their embryo. This is a pressing concern, as case studies on assisted reproductive technologies including in vitro fertilization (which is similar to prenatal genetic editing) show that after these procedures, women are more likely to develop gynecological issues. As prenatal gene editing is interfering with the embryonic environment, placental abnormalities, such as placenta previa and vasa previa, affect the mother’s health. Prenatal gene editing may also result in spontaneous abortion after the injection of a viral vector or after blood sampling, as the mother’s antibodies may not be able to process the injected DNA. During fetal development, it may be possible for the altered gene sequence to interact with other genes that transcribe for similar proteins or have similar configurations, resulting in abnormal genetic activity within the embryo. After birth, it is possible for cell-free DNA from the placenta’s modified genome to exist within maternal blood, which has unforeseen, unexplored consequences. As they have a significant impact on material well-being, in order to be ethically conscious, prenatal editing trials must emphasize the tested outcomes for their female subjects. If the details of the procedure and its effects are hidden from the subjects, these women could undergo complications within their pregnancy. From the perspective of the scientific community, the validity of the study would be compromised and the study itself would not benefit future experiments in gene research without constant monitoring. Monitoring blood oxygen, blood protein, and blood glucose levels are a necessity, as they allow for early detection of epigenetic abnormalities in the mother or the embryo. Within the world of science, the voices of women have often been disregarded, their justified concerns mitigated in favor of the male opinion. In gene editing, this social phenomenon is dangerous, as these procedures directly act on women’s bodies and impact their sense of integrity. Every study on prenatal genomic editing must highlight that the woman involved must give her consent explicitly and will receive only accurate and valid information on the experiment. The expectation of informed, voluntary consent for researchers involves the deconstruction of sociopolitical beliefs that may serve as coercion. According to the NIH, the mother “should be given an opportunity to discuss whether her motivation for cooperating derives from a personal commitment to the pregnancy or from a response to society’s interest in reproduction,” underlining that the consent behind gene editing should be approached from a viewpoint that encourages women to put themselves first instead of focusing entirely on societal growth and justice (Patterson 12). As controversial as it is, genetic editing, especially germ-line editing, has favorable consequences for the growth of humanity as it prevents fatal diseases and complications within the embryo (and potentially, the embryo’s future children). In order for gene editing to be ethical, it is pertinent to recognize the vital role of pregnant women as research subjects, considering that the gene therapy is inserted into their bodies, affecting their health and well-being. Researchers must protect the privacy of women test subjects and their medical information and verify that their study complies with the standards of maternal care offered by obstetricians. If there reaches a period where serious complications arise due to gene editing and the mother’s or fetus’s health is in jeopardy, medical researchers must suggest pregnancy termination or other viable options.Although the scientific community and health organizations have implemented methods to monitor health effects of human genomic alterations, and considered their challenges, their work is limited to discussing the health outcomes of the offspring, not the mother, who is the sole source of nourishment for the fetus. From the words of Aldous Huxley in Brave New World, “One believes things because one has been conditioned to believe them.” If we have been conditioned to not acknowledge the thoughts of women health care professionals and expecting mothers due to the influence of our patriarchal society, we are failing to understand the thought process of half of our population. Without considering its impact on women, their embryos and the embryo’s descendants, prenatal genetic testing should not be continued.