Selangor, Malaysia (Spring 2017)
|Tiny feet of newborn baby|
Would the implementation of ‘designer babies’ be a boon to humans? First and foremost, it helps to detect known genetic abnormalities and chromosomal diseases at an early stage. This would be particularly helpful for couples or individuals who possess a high risk of passing down disadvantageous genes for conditions such as cystic fibrosis and sickle cell anaemia. Current technology enables screening of embryos for a remarkable 1500 genetic traits, including heart disease, obesity, athletic ability, hair and eye colour, height, and even genes linked to intelligence.[v] The ability to screen and choose for favourable traits in non-medical aspects is highly controversial and is currently prohibited in most countries.In this twenty-first century, we have witnessed many astounding developments in medicine. One example is the evolution of the‘designer baby’ concept from an element of science fiction to a popular topic in the bioethical sphere. According to The Embryo Project Encyclopaedia, ‘designer babies’ are genetically engineered in vitro for specially selected characteristics, ranging from lowered risk of certain diseases to gender selection.[i] Pre-implantation genetic diagnosis (PGD) is used to detect genetic defects in early embryos that were conceived through in vitro fertilisation (IVF).[ii] Scientists do this by practicing in situ hybridisation, a method of using complementary DNA, RNA, or modified nucleic acid strands to locate and label genetic abnormalities.[iii] On rare occasions, this procedure may be followed by germline modification, in which changes are deliberately induced to the genes that will be passed on to future generations.[iv] As with most developments, the advancement in concept of designer babies has its repercussions as well. These are not to be taken lightly, as this technology has the potential to play a fundamental role in our own future existence.
However, when used to screen for serious genetic risk, the availability of PGD services would enable parents to make a more informed decision regarding possible outcomes of a pregnancy, since the procedure is performed prior to implantation of an embryo in the uterus. If they choose to continue with the pregnancy, they may be more prepared physically, mentally, and emotionally to face the prospect raising a child with particular conditions. Though it may seem trivial at first, this angle should not be taken lightly, as raising a disabled child may include significant social and financial risks. If not properly managed, these situations could lead to other problems such as family disintegration and psychological stress.
Risks associated with multiple pregnancy can also be decreased significantly through PGD, such as premature birth and low birth weight,[vi] cerebral palsy, incomplete separation, congenital abnormalities such as gastrointestinal and cardiac problems, as well as neural tube defects. Complications may also include miscarriage or stillbirth. At present, many multiple pregnancy cases occur as a result of IVF. PGD helps to reduce multiple pregnancy risk by screening and identifying a single, healthy embryo for implantation without compromising the chances for a successful pregnancy.
Germline gene therapy ventures further into the designer baby concept by enabling corrective modifications to be made on disease-carrying mutations, which are inherited from one generation to the next. A clear example would be Huntington’s disease, an autosomal dominant disorder in which one copy of the defective gene is sufficient for a person to develop the disease. Through germline gene therapy, the generation being treated would have a greater chance to lead a healthy life. In the long run, this may also lead to economic and societal advantages, as the occurrence of certain diseases decreases within a community. . However, editing embryos and germline modification for reproductive use remains illegal in most countries. It is a high risk procedure that requires extremely careful regulation, in addition to the possibility of it being misused for inappropriate gains. In the United States a restricted use of germline modification is allowed under heavy regulation by the Food and Drug Administration (FDA) and National Institutes of Health (NIH).[vii] Similarly, the Gene Therapy Advisory Committee (GTAC) in the United Kingdom monitors the use of gene therapy and prevents it from being used to select characteristics for non-medical purposes.
Unfortunately, given the high level of expertise, facilities, and equipment required, it is unlikely that PGD services will be equally available to all communities worldwide. Certain groups of people are more likely to have access to these services because of political, financial, and geographical conditions, or even on the basis of race or religion. Hence, this move may eventually widen the gap between certain communities, create a perception of some societies being more ‘superior’ to others, and lead to preferential opportunities in higher education and job markets.
Individuals who view this issue from a spiritual angle often express opinions that the use of PGD or germline modification is against nature or God’s will.. There are two noteworthy points in viewing the issue from this perspective. First, there is always room for miscalculations and errors in judgement. For instance, Stephen Hawking, the famous theoretical physicist, cosmologist, and author, was predisposed to a rare early-onset, slow-progressing form of amyotrophic lateral sclerosis (ALS), a motor neurone disease that results in death of neurones controlling voluntary muscles.[viii] However, the disease he has does not undermine his potential or the invaluable contributions he has made in the fields of theoretical physics and cosmology. We may not be able to fully predict the outcome of a person’s life based on their genetic composition alone. Second, it is a known fact that genes may not necessarily code for a single good or bad trait. Pleiotropy happens when one gene influences two or more phenotypic traits that seem unrelated. Hence, in the process of getting rid of certain alleles which seem to be disadvantageous, some form of natural balance in the frequency of alleles may be disrupted. Therefore, it is possible to lose certain valuable genes and amplify other disadvantageous ones, which may affect humans in the long run.
Apart from that, germline modification has its own inherent risks and disadvantages as well, as it is a risky procedure that requires precise handling. Even if the modification procedure itself was successful, there is still a high chance of unwanted effects arising from it, since there are many unknown variables in the technology and knowledge we have to date. Gang Bao, a professor of Bioengineering at Rice University in Houston, Texas., illustrated this with the analogy of nanoscissors to depict the CRISPR-Cas9 gene editing technique. When placed in a culture of cells, it will cut the section of the defective gene so that it can be replaced by a properly functioning gene segment. However, it may also be possible for the nanoscissors to cut other gene sequences along with the intended ones and cause off-target effects.[ix] This may even lead to the accidental creation of new diseases. Furthermore, germline modification produces changes that will be inherited by the offspring, so any error or new gene defect which occurred during the procedure will be passed on to the next generation. The situation is further worsened by the fact that it may take several generations for the mutated gene to project itself phenotypically and be discovered.
In conclusion, there are many aspects that need to be considered and regulated in order to use ‘designer baby’ technology optimally, including:
- Determination of specific traits to be screened and modified
- Strict regulation and enforcement to prevent rule breaches (involving non-medical or not-so-severe traits)
- Evaluation of the effect of socioeconomic background and geographical location on the need and accessibility of services. (For instance, getting rid of sickle cell trait in places where malaria is rampant may in fact be dangerous).
- Reducing possibility of off-target effects in germline modification
- Interests of parents in determining the traits of their children
- Ly, Sarah. 2011. Embryo Project Encyclopedia. March 31. Accessed January 29, 2017, https://embryo.asu.edu/pages/ethics-designer-babies.
- Stankovic, Bratislav. 2005. It's a Designer Baby! - Opinions on Regulation of Preimplantation Genetic Diagnosis. Rochester, New York, February 7.
- O'Connor, C. 2008. "Fluorescence in situ hybridisation." Nature Education 1(1): 171.
- E.Hanna, Kathi. 2006. National Human Genome Research Institute. Accessed January 29, 2017. https://www.genome.gov/10004764/germline-gene-transfer/.
- Abraham, Carolyn. 2012. The Globe And Mail. January 7. Accessed January 29, 2017. http://www.theglobeandmail.com/life/parenting/pregnancy/pregnancy-trends/unnatural-selection-is-evolving-reproductive-technology-ushering-in-a-new-age-of-eugenics/article2294636/singlepage/.
- Alexander G., Kogan M., Martin J., Papiernik E. 1998. "What are the fetal growth patterns of singletons, twins, and triplets in the United States?" Clinical Obstetrics and Gynecology 41(1) 114-125.
- Ishii, Tetsuya. n.d. "Germline genome-editing research and its socioethical implications." Trends in Molecular Medicine. 21(8) 473-481.
- McCluskey, Leo, interview by Katherine Harmon. 2012. How Has Stephen Hawking lived to 70 with ALS? (January 7).
- Patrick, Skerrett. 2015. STATNEWS. November 17. Accessed January 29, 2017. https://www.statnews.com/2015/11/17/gene-editing-embryo-crispr/.
HANUSHA DURGANAUDU is a medical student from Selangor, Malaysia. Born in a family where ethics and philosophy are considered subjects of great importance and worthy of frequent discussions, Hanusha has developed great interest in the field and is an avid reader and thinker. During her free time, she prefers to read novels, especially medical thrillers and mysteries. Hektorama | Ethics