Designer Babies: Genetic Selection & Modification of Human Embryos

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1 Hoffman 1 Sara Hoffman May 16 th, 2018 ST112: Introduction to STS Designer Babies: Genetic Selection & Modification of Human Embryos Designer babies is a colloquial term for human embryos that have been genetically modified or selected to have (or lack) a specific trait or gene. For example, parents may select for their child to have increased muscle mass or lack a predisposition to Alzheimer s disease. The popularization of such genetic selection tactics has sparked numerous concerns regarding the ethicality of these techniques and how they will affect our society. Firstly, if many prospective parents eliminate a particular gene from their future children s genomes, the variation in the human gene pool will be reduced. Secondly, procedures integral to the designer baby process are highly expensive, which has prompted to concerns about different social and economic classes being able to afford designer babies. Finally, some motivations for utilizing methods of genetic selection of human embryos are ethically controversial. The development of genetic testing and modification of human embryos during the 1990s has spurred ethical concerns including reduced gene variation and the possible widening of the social and economic divide. Genetic testing and modification occurs during In Vitro Fertilization (IVF) of human embryos. IVF is a type of Assistive Reproductive Technology (ART) commonly used to treat infertility. During IVF, eggs are harvested from a female and sperm is provided by a donor male. The eggs are then fertilized with the sperm in a laboratory setting through a process known as insemination. After fertilization is complete and cell division is taking place, the fertilized eggs are considered embryos. Lastly, these embryos are transferred into a woman s uterus three to five

2 Hoffman 2 days after fertilization. IVF procedures have varying rates of success based on the client s age and health ranges with an average success rate of IVF procedures between 13% and 43% (American Pregnancy Association 2018). It is during the IVF process that genetic testing of human embryos occurs through a process known as Preimplantation Genetic Diagnosis (PGD). PGD was first introduced in 1968, when it was shown to successfully facilitate the selection of sex in newborn rabbits. Since then, PGD has also provided an effective way of predicting a predisposition to Mendelian diseases. As Assistive Reproductive Technologies have developed and become popularized, PGD has become increasingly available. PGD allows prospective parents to determine which embryos contain the genetic markers for specific traits like sex or various genetic diseases. To determine which embryos have particular genetic markers, one or two cells are removed from five day old embryos (comprised of eight cells), and the embryos are frozen. The DNA from the removed cells is analyzed to identify which embryos contain the genetic markers of interest. This analytic process generally takes about a week and can involve several diagnostic procedures. The two most common diagnostic processes are fluorescent in situ hybridization (FISH) and a polymerase chain reaction (PCR) (Wert, 315). FISH is a technique that uses a fragment of DNA or RNA that will bind to a portion of the cell s DNA strand that contains the same genetic markers. PCR is a technique that amplifies DNA to allow scientists to look at the sequence. After genetic diagnosis, embryos free of any undesired genetic markers are implanted into the mother s uterus. There are several obvious benefits of utilizing PGD prior to conception. If prospective parents know that they are carriers of a genetic element that indicates a predisposition to a genetic disease, they can protect their offspring from the dangers of inheriting that genetic disposition by only utilizing embryos that lack the corresponding genetic marker. Additionally,

3 Hoffman 3 genetic screening before implantation protects parents from having to decide whether to abort a pregnancy after genetic screening post-conception reveals a Mendelian disease by giving parents advanced knowledge of this condition and allowing them to avoid conceiving a child with this type of disease. Furthermore, some PGD results indicate that if the embryo is implanted, it could lead to a higher risk for miscarriage. Since miscarriages are both physically and emotionally trying for prospective parents and their friends and family, advanced knowledge of this possibility (and the ability to avoid an increased risk of miscarriage if prospective parents choose to do so) is another benefit of PGD. An example of the potential benefits of PGD are exemplified by the case of Amanda Kalinsky. In 2009, Kalinsky was told that she would be the sixth generation of her family afflicted by Gerstmann Sträussler Scheinker syndrome (GSS), a neurodegenerative genetic disease that is fatal by the age of 60 (NBC 2014). Of many rare diseases, 80% of them are genetic in origin, including GSS (Congenica). 95% of rare diseases that are genetic in origin have no drug treatment or cure (Congenica). In Kalinsky s case, to protect her children from inheriting the deadly disease, she and her husband used IVF and PGD, giving her back a sense of power against her disease. Without the use of IVF and PGD, her children would have to deal with the loss of their mother and the dilemma of whether to put their own children in the same situation. Because she could ensure that her children would not be afflicted by Gerstmann Sträussler Scheinker syndrome, the disease will not be passed down to any of their future offspring; thus, she stopped the disease in its tracks.

4 Hoffman 4 Though PGD allows parents like the Kalinskys to conceive children without the concern of passing on bad genes, this practice of genetic modification has raised several ethical concerns. The first concern is that modifying the human genome to prevent predispositions to particular diseases or conditions eliminates variation within the human genome. If most prospective parents utilizing IVF and PGD discard embryos with genetic markers for the same disease(s) or condition(s), then the genetic variation of the human gene pool will be reduced. It is possible that by eliminating embryos with genetic markers for genetic diseases, these parents will also be eliminating embryos with a genetic protection against a different disease or virus. Reducing the variation in the human gene pool increases the likelihood that a future disease outbreak could significantly reduce the human population. Another ethical dilemma presented by these practices is economic. IVF and other Assistive Reproductive Technologies can be extremely expensive. In the case of the Kalinskys, they paid $20,000 out of pocket for just a single round of the procedure (NBC 2014). Depending on how prevalent a disease is and how lucky a prospective mother is during the IVF process, it could take several rounds to conceive a child. For example, over multiple rounds of ARTs, the Kalinskys were able to obtain fourteen embryos without the GSS gene, but in the process, they discarded six embryos with the GSS gene (NBC 2014). While the Kalinskys did not share how many rounds it took for them to find success, many sources cite three rounds of IVF as the

5 Hoffman 5 average number of attempts by women using ARTs to become pregnant (Miller 2015). Three rounds of IVF costs almost as much as a year at Colby or another liberal arts college, and there are fewer sources of financial aid available to prospective patients. Many insurance companies will not pay for IVF and PGD procedures since prospective parents pursuing ARTs are not always categorized as infertile. This leaves them to pay out of pocket, like the Kalinsky family did. The high price tag of IVF and PGD restricts its availability to members of lower economic and social classes. As these technologies become more widespread, there could be a widening of the economic disparities in our society. Those who are wealthy enough to afford the procedures will be able to select for their children to be more genetically optimal than parents who cannot afford to protect their children from genetic diseases. This, ultimately, creates a society where the wealthy s children have biological advantages over other children; the ethical concerns prompted by this are obvious. This discrepancy will widen the economic gap that created it and simultaneously increase the health gap between the rich and the poor. As the gap widens, the rich and the poor could morph into the superior and the inferior of those who were genetically selected for as children and those who were conceived the old-fashioned way. In addition to ethical concerns regarding the reduction of variation within the human gene pool and the availability of IVF and PGD to different economic classes, there are also ethical concerns regarding a parent s motivation to utilize these procedures. While PGD allows us to discern which embryos have genetic markers for diseases like GSS, it also allows us to discern which embryos have genetic markers for non-fatal genetic disorders such as Down Syndrome. Given the opportunity to select for a child to be free of any genetic disorder, prospective parents will be tempted to do so. However, many people living with Down Syndrome or parents of

6 Hoffman 6 children with Down Syndrome view the extra chromosome that individuals with Down Syndrome have as a blessing. Amy Spampinato, a blogger for a prominent health blog called The Mighty, reflects on her daughter with Down Syndrome saying she wouldn t change [her] for anything, and that after getting to know people with Down Syndrome you will be a better person (Spampinato 2018). Therefore, many people are doubtful that selection against individuals like Spampinato s daughter is a good (or morally sound) decision. Selection against individuals with non-fatal genetic disorders is sometimes viewed as a modern brand of eugenics rather than a medical necessity, and some believe that this is not reason to discard an embryo during IVF and PGD processes. Selection against individuals with non-fatal genetic disorders is one example of genetic manipulation that some scientists categorize as immoral. In addition to selecting against genetic markers that indicate risk for genetic diseases, some prospective parents also select for their child to have genetic markers that indicate a desired blood or HLA type. In many of these cases, this child is conceived for the express purpose of donating blood, bone marrow, or other biological elements to an ill sibling and is known as a savior sibling. Similarly to selecting against nonfatal genetic diseases, this practice raises several ethical concerns. If modern medicine cannot save a sick child, but a savior sibling could, is it morally right to let the child die? Is it right to bring a child into the world for the express purpose of donating their biological materials to a sibling, with donations beginning as soon as their birth? There are many factors to consider, including the mental stress on the savior sibling knowing they are responsible for keeping their ill sibling alive and what kind of childhood they have when they are physically limited based on donating biological materials, which can involve invasive medical procedures.

7 Hoffman 7 A good illustration of some concerns related to savior siblings is found in Jodi Picoult s book (and movie adaptation) My Sister s Keeper. Picoult s novel tells the story of a thirteenyear-old girl, Anna, who was conceived to donate bone marrow to her sister, Kate, who suffers from acute promyelocytic leukemia, a cancer of the blood and bone marrow. Anna has donated blood and bone marrow to Kate several times, but upon discovering that she is supposed to donate one of her kidneys, Anna seeks representation and sues her parents for the right to make medical decisions regarding her own body. Eventually, it is revealed that Anna is seeking medical emancipation because Kate did not want her to have to donate her kidney, because it would seriously impact the rest of Anna s life, and Kate was ready to die. Through emotionfilled scenes including Anna proclaiming that she was conceived as spare parts for Kate it becomes clear how Anna has been forced to grow up faster than she should have and that the ethics of her conception are questionable at best (Picoult 11). The same ethical concerns regarding savior siblings and economic and social divides presented by the use of IVF and PGD for genetic selection are also presented by the use of gene modification for genetic modification. These technologies are not yet as widespread as IVF and PGD because many of them are still in phase one of clinical trials. The most developed methods include CRISPR, which uses an enzyme (Cas9) that cuts a strand of DNA so that bits of genetic material can be added or removed. The biggest ethical concern raised by genetic modification is that any errors created by altering the DNA sequence could introduce new disease or remove protection against existing diseases or viruses. Moreover, any errors created by this genetic manipulation could be passed down to the affected individual s offspring. In an effort to provide some regulation and offer a solution to some of the issues reviewed in this discussion of designer

8 Hoffman 8 babies, a group of clinicians met in 2015 and urged a worldwide moratorium on the new geneediting technologies that make changes heritable (Wade 2015). The meeting in 2015 was just the first step in what is sure to be a long process of deciding what form of regulation is best for the designer baby industry. Currently, there is very little oversight of these processes in the United States, and all the decisions are left largely to health care providers. In the United Kingdom, clinics are required to obtain a special license before performing PGD procedures, and then the processes are regulated by the Human Fertilization and Embryology Authority (HFEA) (Scientific American). The HFEA has had rules in place for almost thirty years that limit the number of embryos implanted and the selection of sex for non-medical reasons (Scientific American). The UK s solution is more viable than solutions in other foreign countries, like Italy, where there are complete bans on all PGD uses. As an STS scholar proposes, total prohibition seems to be neither a viable option nor an intelligent one since PGD has many benefits to society (Turriziani 21). As methods for genetic selection and genetic modification become more advanced and more widely available, there will need to be some type of regulation at a national level to ensure that the good aspects of these technologies outweigh the bad ones. The practices of IVF and PGD have become increasingly popular since the 1990s. There are many potential benefits of employing these methods of genetic selection in human embryos, including protecting one s children from genetic risk factors or genetic diseases. One such example is the Kalinsky family successfully ensuring that their children would not be afflicted by GSS. However, the practice of genetic selection also raises several ethical concerns, including a reduction of variation in the human gene pool, an expansion of social and economic inequality within our society, and immoral motivations for utilizing the IVF and PGD to select for desired

9 Hoffman 9 traits. As Kranzberg s first law states, technology is neither good nor bad; nor is it neutral, and the ability to create designer babies is neither entirely good nor entirely bad. Society must use caution when deciding where to draw the line on genetic selection in human embryos. Works Cited Ball, Philip. Designer Babies: an Ethical Horror Waiting to Happen? The Guardian, Guardian News and Media, 8 Jan. 2017, Iredale, R., Longley, M., Thomas, C. and Shaw, A. (2006), What choices should we be able to make about designer babies? A Citizens Jury of young people in South Wales. Health Expectations, 9: doi: /j x Miller, Korin. Study: This Is How Many Attempts It Takes for IVF to Be Most Successful. Glamour, Glamour Magazine, 26 May 2017, Nature News, Nature Publishing Group, Regalado, Antonio. We Uncovered the Plan to Engineer the Human Species. MIT Technology Review, MIT Technology Review, 7 Apr. 2016,

10 Hoffman 10 Suter, S. (2007). A Brave New World of Designer Babies? Berkeley Technology Law Journal, 22(2), Retrieved from Turriziani, Jenifer V., "Designer Babies: The Need for Regulation on the Quest For Perfection" (2014). Law School Student Scholarship. Paper Steve Connor Science Editor. IVF: First Genetically-Modified Human Embryos 'Could Be Created in Britain within Weeks'. The Independent, Independent Digital News and Media, 13 Jan. 2016, Wade, Nicholas. Scientists Seek Ban on Method of Editing the Human Genome. The New York Times, The New York Times, 19 Mar. 2015, Wert, GMWR De. Preimplantation Genetic Diagnosis. Freshwater Biology, Wiley/Blackwell ( ), 24 Sept. 2009, onlinelibrary.wiley.com/doi/epdf/ /j x.

11 Hoffman 11 Genetic Tool Delivers Healthy Babies to Mom with Fatal Disease. NBCNews.com, NBCUniversal News Group, 3 Feb. 2014, Advanced Fertility Center of Chicago. Does PGD & PGS Help IVF, Pros and Cons of Genetic Testing with IVF, Designer Baby. Wikipedia, Wikimedia Foundation, 30 Mar. 2018, en.wikipedia.org/wiki/designer_baby#regulation_of_preimplantation_genetic_diagnosis. Expert Argues That Gene Editing Will Widen Economic Class Gap. Futurism, Futurism, 9 Aug. 2017, futurism.com/expert-argues-that-gene-editing-will-widen-economic-class-gap/. In Vitro Fertilization (IVF): Side Effects and Risks. American Pregnancy Association, 28 July 2017, americanpregnancy.org/infertility/in-vitro-fertilization/. The Need to Regulate Designer Babies. Scientific American, What Is CRISPR-Cas9? Facts, The Public Engagement Team at the Wellcome Genome Campus, 19 Dec. 2016,