“Regardless of these advancements, there continue to be ethical questions that remain largely unanswered, but boil down to how much we accept and value patient voice as we work towards freedom from suffering.”
Viewing entries by
Gabrielle Guido
"gene therapies that target young patients can be problematic in providing them overmedicalized treatment without them understanding the impact of their condition"
“We must weigh the potential risks of medication use during pregnancy for each individual woman—taking an individualized, holistic approach for treatment that also acknowledges the wellbeing of the mother.”
Journalist Jenny Kleeman was devastated when she lost her 20 week healthy baby due to appendicitis. The infection caused her cervix to open and forced her into labor—killing her baby in the process. It is women like Kleeman that ectogenesis or artificial wombs seek to aid [1]. Ectogenesis seeks to address the long term effects of preterm pregnancies—particularly on POC women—in addition to allowing more flexibility of how pregnancy is experienced in the future. However, there are some potential drawbacks in who would have access to this expensive technology, in addition to changing the social role of pregnancy.
Ectogenesis is currently being explored with lambs at the Children’s Hospital of Philadelphia using Biobag systems. These Biobags act like an amniotic sac with fluid that the fetus would breathe in. The replacement placenta is an oxygenator plugged into the umbilical cord which delivers nutrients and allows for gas exchange. This would allow parents to watch their fetus grow to full-term if born prematurely between 20-24 weeks [1].
One of the biggest benefits of this approach is reducing preterm birth deaths and the associated disabilities. Premature births account for 10.5% of live births and is the leading cause of death among children under 5 [1]. Eighty-seven percent of children born prematurely experience disabilities related to their bowels, brain damage, blindness, poor growth, cerebral palsy, learning difficulties, and lung disease [2].
Therefore, these new incubators would allow for the process of gestation to continue—preventing future disability or long term consequences related to premature birth. This process has not yet been explored for the entire process of pregnancy which is more technically complicated, but allows for the improvement of fetus viability. Although this is far in the future, the early stage of this research provides hope for those who may be at higher risk for preterm birth including those who have diabetes, pregnancies with multiple births, high maternal age, a lack of prenatal care, struggle with chronic stress, hypertension etc [3].
Black women face the highest rates of maternal mortality, accounting for 14.2% of premature births [3]—higher than any other racial group. Consequently, this places more Black children born with disabilities within the 30% of Black children who are impoverished [4]. With a higher likelihood of being subjected to both poverty and disability, Black children face severe systematic oppression regarding healthcare access, education access, food security, and insurance access. Therefore, families that face complications from preterm birth may be unequipped to deal with the health-related issues associated with the birthing process with little to poor government or social assistance. Additionally, with poor prenatal care, one in nine women lacking health insurance coverage [4], and obesity being key risk factors for premature birth, Black women in poverty are systematically disadvantaged without education of reproductive resources, the capitalist marketing of cheap, unhealthy diets, and no access to healthcare. Therefore, even before birth, POC women are told that their health and the health of their children doesn’t matter by dismissing and failing to provide adequate prenatal or general healthcare. By researchers taking the initiative to find solutions related to high rates of maternal mortality and preterm birth disability, they are providing hope to numerous POC mothers by prioritizing the health of those who are affected most. This can begin to deconstruct the inherent disadvantages that non-white children in lower socioeconomic groups are facing—closing the ever-widening gap with the middle class.
The future of ectogenesis involves the development of external wombs that can be used on embryos, which would aid in the preservation of maternal health. Not every woman’s body can handle the potentially trauma-inducing consequences of pregnancy including those who have to take life-saving medications for epilepsy, bipolar disorder, or cancer [1]. Not to mention the numerous health-related issues that may arise during pregnancy, including gestational diabetes, high blood pressure, depression, and anxiety [5]. This means that women would no longer have to choose between their desire for motherhood and the health of their fetus, and their own health. This frees women from the implications of the birthing process that wreak havoc on their mental and physical health—in addition to allowing women who are deemed to have ‘unviable’ uteruses to have children. With similar arguments being made in favor of IVF and egg freezing, this provides women with the opportunity to have a more flexible timeline and choice to their motherhood.
In addition, this would address the harmful birthing process itself that is only the beginning of the dismissal for the symptoms women experience to be dismissed as ‘normal.’ Heartburn, incontinence, nausea, and anemia would be considered pathological in any other context, except pregnancy where they are brushed aside as being typical [1]. This constant dismissal of symptoms represents a pattern of expecting women to endure extreme pain throughout pregnancy and the birthing process By removing the experience of pregnancy and these symptoms as ‘just a part of being a woman,’ this may combat the societal dismissal of legitimate medical concerns and push individuals to take medical concerns presented by women more seriously without pushing them aside just based on their fertility and gestational status.
Another benefit of ectogenesis is its changing of the role of parenthood. This may allow for the expansion of the archaic depiction of women as exclusively being the childbearers and caretakers. With the ability to raise children without a mother, both genders can participate equally in the birthing process—developing a similar connection and social role associated with the child. This would allow for women to be viewed beyond their reproductive capacity, in addition to preventing the social devaluation of those who are unable to carry to term or have a viable pregnancy.
However, there are some potential ethical drawbacks to artificial womb development. Currently, technologies like IVF and egg freezing which inspire this research cost anywhere from $15,000 to $30,000 per round [6]. This means that although this technology would theoretically help thousands of POC, low-income children and mothers, it would most likely only be accessible to high-income populations. This would also have the potential to widen the existing socioeconomic gaps. Fewer high-income children would be dealing with the severe disability and long-term complications associated with preterm birth, while low-income children would be left to deal with poverty and poor healthcare access—exacerbating systematic issues related to health and socioeconomic status.
Moreover, this could create a form of ‘marking’ of the female body depending on socioeconomic status. Those who may have unplanned pregnancies or those who cannot afford ectogenesis could be placed in a social hierarchy below those who have external wombs. The physical designation of a woman as being pregnant would make these individuals easier to identify and ostracize. This could unfairly label a woman as poor, careless or an unfit mother [1].
Beyond this, those who don’t want to have children who opt for abortion have the potential for these embryos or developing fetuses to be saved without the mother’s consent. This would impose motherhood on someone who has exercised a choice to not be a mother—worsening the social designation of women as being pressured into their roles as mothers. With abortion being a woman’s choice, the preservation of embryos jeopardizes the mother’s wishes to not have the pregnancy at all. The possibility to preserve the embryos for donation would therefore exacerbate the already controversial dichotomy of pro life versus pro choice movements. This continues to limit the choice for women to have bodily autonomy and exercise their right to choose.
Moreover, gestational processes have many benefits for the women who take power in their role as being able to carry and grow another human being. Many women enjoy the embodiment of being pregnant and the unique bond that forms between themselves and the child. The closeness that is experienced during those 9 months may help women connect and solidify their relationship with their unborn children. On a biological level, oxytocin levels increase during birth to promote contractions but also decrease stress and reinforce the mother-child bond after birth [7]. As a result, taking the experience away would also affect women hormonally and throughout their role as a mother.
Although this technology is in the very early stages of its development, it signals a continuous push for innovation. Despite the potential ethical dilemmas of favoring service to the white, middle-class, in addition to changing the definition of motherhood, I believe that this still allows women more reproductive options. This would provide unprecedented opportunity for women to be appreciated beyond their gestational role, in addition to acknowledging and providing care to the POC women most impacted by premature births.
References:
[1] Guardian News and Media. (2020, June 27). 'parents can look at their foetus in Real time':
Are artificial wombs the future? The Guardian. Retrieved April 3, 2023, from https://www.theguardian.com/lifeandstyle/2020/jun/27/parents-can-look-foetus-real-time artificial-wombs-future
[2] Short and long-term effects of preterm birth. UK HealthCare. (n.d.). Retrieved April 3, 2023,
from
https://ukhealthcare.uky.edu/wellness-community/health-information/short-long-term-eff ects-preterm-birth
[3] A Profile on Prematurity in the United States. Prematurity profile. (n.d.). Retrieved April 3, 2023, from https://www.marchofdimes.org/peristats/tools/prematurityprofile.aspx?reg=99 [4] Child poverty increased nationally during COVID, especially among Latino and black
children - child trends. ChildTrends. (n.d.). Retrieved April 3, 2023, from https://www.childtrends.org/publications/child-poverty-increased-nationally-during-covid -especially-among-latino-and-black-children
[5] U.S. Department of Health and Human Services. (n.d.). What are some common
complications of pregnancy? Eunice Kennedy Shriver National Institute of Child Health and Human Development. Retrieved April 3, 2023, from
https://www.nichd.nih.gov/health/topics/pregnancy/conditioninfo/complications [6] Forbes Magazine. (2023, March 7). How much does IVF cost? Forbes. Retrieved April 3, 2023, from https://www.forbes.com/health/family/how-much-does-ivf-cost/ [7] Uvnäs-Moberg, K., Ekström-Bergström, A., Berg, M., Buckley, S., Pajalic, Z.,
Hadjigeorgiou, E., ... & Dencker, A. (2019). Maternal plasma levels of oxytocin during physiological childbirth–a systematic review with implications for uterine contractions and central actions of oxytocin. BMC pregnancy and childbirth, 19, 1-17.
For 31-year-old Christine Carroll, after three years of infertility, it was time for her to begin her IVF journey with her husband Chris. After being told a single round of IVF cost $22,000 to $30,000, she also learned her employer covered up to three rounds. To her, this provided her with a unique opportunity to have peace of mind over her professional and family goals—in addition to relieving the financial pressures that accompany fertility treatments [1].
In recent years there has been growing popularity incorporating fertility benefits into company insurance coverage. This includes companies like Apple, Google, Facebook and other giants that cover over $20,000 worth of services to support their employees fertility and familial goals [2]. As of 2021, over 800 companies are now offering fertility benefits—and the number is only growing [3]. Fertility benefits include egg freezing, IVF treatments, and more. For Amazon employees, they are given access to over 900 physicians and fertility specialists—going beyond just covering the cost of care and allowing them the flexibility to choose their provider [4]. Now 59% of women say they would choose an employer that had fertility benefits over one that doesn’t [2]. Therefore, this new initiative not only supports women, but also allows for company expansion and popularity.
Egg freezing begins with removing eggs and freezing them to be used at a later time, which are then fertilized and implanted back into the uterus through IVF [5]. IVF begins with the fertilization of a mature egg from the donor with a sperm. This fertilized egg is then transferred into the uterus where it implants to become an embryo. This allows heterosexual parents to both use their sperm and eggs, and for single or same-sex individuals to use a sperm donor. IVF decreases chances of miscarriages and genetic abnormalities through screening before implantation, but also increases the chances of twin or multiple pregnancies [6].
Both IVF and egg freezing allows people with female reproductive systems to take control of their own fertility by choosing when they get pregnant. This keeps them from being pressured by a ‘biological clock’ to begin a family. Without being concerned about a time limit for reproduction, they get more time for interests outside of having a family, such as a career, travel or hobbies. Therefore, they can dictate the trajectory of their lives and lifestyles free from the biological restrictions of reproduction and age.
This biological factor heavily intertwines with social value, which expands with reproductive technology access. It is still difficult for women to reconcile ideals of family, while also being valued and supported in the workplace. With less fertility support, women might be pressured to work more to support themselves and may be unable to cut out time for family planning. Additionally, women without these opportunities may end up having children anyways and be stretched thin between work and trying to provide which can exacerbate financial stressors. There is a social constraint where those who do choose to have children may not experience motherhood as a real choice, and may be lacking in other opportunities for personal or professional development [7]. Alternatively, they may feel resentment as a result of having to make a ‘sacrifice’ to have a family instead of a career. This is a binary that has made women feel that they have a ‘duty’ to have children instead of prioritizing their own growth and values. This continues to place women within the rigidity of motherhood, while giving value to them only if they choose to have children. Providing these benefits begins to dismantle these social norms by expanding the flexibility of women to choose themselves, but also a family—removing their mutual exclusivity.
Another perspective on providing these benefits would be its ability to reinforce the biological role of women by encouraging them to take advantage of IVF and other reproductive resources. There was initial concern for having to spend more money on fertility benefits, however, companies have actually decreased their spending. This is because otherwise, women doing fertility treatments would be taking paid leave—costing the company time and money [8]. Beyond this, if a patient does out of pocket IVF they may be more inclined to ask the physician to increase embryo transfer numbers, compromising their own safety and leading to more sick time taken. Therefore, with the prioritization of family planning for top companies, women’s safety and company time are both improved.
Providing IVF support is not only a step forward in not forcing women to choose between career and family goals, but also supports LGBTQ+ individuals in having biological children. One way IVF and egg freezing allows for LGBTQ+ couples to have their own children is reciprocal IVF—having one partner donate an egg while the other acts as a gestational surrogate [2]. LGBTQ+ access to these technologies breaks down the restrictive nuclear family that often excludes and diminishes the role of same-sex parents. This expands how we view and define the parenting process, allowing each individual to take part in different aspects of the birthing process. Companies improving access to these technologies for LBGTQ+ couples legitimizes and validates their identity, while allowing partners to feel equal in the creation of a child.
However, there continue to be ethical challenges to fertility treatments. One of the major questions regarding IVF and egg freezing treatments is the upper age limit. With women having the ability to have children older, even with a healthy pregnancy they may have an increased risk of disease or death that could hinder their ability to parent [9]. Furthermore, fetal and maternal safety—particularly for high-risk twin pregnancies that often result from IVF—may be in jeopardy as age increases. Lastly, if women are using donated eggs, there is concern for older women being prioritized over younger women struggling with infertility who may have a better chance of a successful pregnancy. Therefore, these companies would be inadvertently encouraging more dangerous or high-risk pregnancies to jeopardize the safety of the woman and the child, in addition to decreasing resource allocation to younger women. This brings into question who exactly is considered valued in their role as a mother and if we should provide donor eggs to those who want them or those who have the best chance for viable pregnancies? This would be giving medical institutions the power to decide who is best suited for reproducing—not the mothers themselves.
As a counter to this argument, I believe it boils down to creating a space for reproductive autonomy and allowing any woman at any time to choose how and when she wants a child. In order to prevent age being something that limits reproductive access, other factors should be considered in conjunction with age that are more valuable parameters including cardiovascular health, lifestyle, and drug and alcohol use. This would expand reproductive access to older women—without age being a limiting factor—while allowing for a more scientifically-accurate analysis that would assess the safety of assisted reproductive technologies. Despite this rationale, evaluation on lifestyle or biological traits may open up more room for bias—incorporating prejudice to profile individuals as ‘unfit’ parents based on assumptions related to race, drug use, and socioeconomic status.
Another argument that questions these policies bring into question is who exactly gets access to them. For certain employees, their job status may not entitle them to these benefits, which ostracizes low-income individuals who may not have access to the quality education needed to qualify for these jobs at top companies. This provides overwhelming access to middle-class white individuals while overlooking the gaps at companies dominated by disadvantaged individuals such as fast food giants like McDonalds and Taco Bell. At McDonalds, 1 in 5 workers makes less than $10 an hour—putting them below the poverty line, forcing them to work more, with fewer benefits and less family planning flexibility [10].
Despite this, the move towards supporting women’s rights and choices is inspiring a new movement towards reproductive autonomy and equality in the workplace. This creates a huge step towards dismantling the binaries of gender roles and motherhood, while also improving the safety of the birthing process. However, as someone who is a woman entering into the high-intensity and rigid field of medicine, I acknowledge my bias in wanting more flexibility in family planning with holistic considerations beyond age. These are policies that would directly affect my ability to exercise my reproductive rights, while allowing me to pursue my career goals. A question I would pose is how one might question the motivations of companies to do this—do they want to just prioritize productivity, or women’s health? A last consideration could be how this might lead to the potential enticement of women to utilize artificial wombs or surrogacy to improve company productivity. Is this the beginning of a new feminist movement, or leading to an ever-worsening emphasis on capital gain?
Resources:
1. MFoxCNBC. (2022, October 21). Employer fertility benefits have a dramatic and
startling expansion amid the great resignation, experts say. CNBC. Retrieved February 25, 2023, from
https://www.cnbc.com/2022/05/27/employer-fertility-benefits-are-on-the-rise-ami d-the-great-resignation.html
2. Vinopal, C. (2022, March 3). Large employers remain the best hope for Women Seeking
Fertility Benefits. Quartz. Retrieved February 25, 2023, from
https://qz.com/work/2130224/more-us-companies-are-adding-ivf-and-egg-freezin g-to-their-insurance-plans
3. FertilityIQ. (n.d.). 2021 fertilityiq workplace index. Retrieved February 25, 2023, from
https://www.fertilityiq.com/topics/fertilityiq-data-and-notes/fertilityiq-workplace-i ndex
4. Amazon.jobs. (n.d.). Benefits overview for US amazon employees (excluding CT, IL, in,
MD, NC, PA, UT, & wi). Retrieved February 25, 2023, from
https://www.amazon.jobs/en/landing_pages/benefitsoverview-us
5. Mayo Foundation for Medical Education and Research. (2021, April 23). Egg freezing.
Mayo Clinic. Retrieved February 25, 2023, from https://www.mayoclinic.org/tests-procedures/egg-freezing/about/pac-20384556
6. Mayo Foundation for Medical Education and Research. (2021, September 10). In vitro fertilization (IVF). Mayo Clinic. Retrieved February 25, 2023, from https://www.mayoclinic.org/tests-procedures/in-vitro-fertilization/about/pac-2038 4716
7. OLIVER, K. (2010). Motherhood, Sexuality, and Pregnant Embodiment: Twenty-Five Years of Gestation. Hypatia, 25(4), 760–777. http://www.jstor.org/stable/40928655
8. Homepage | resolve: The National Infertility Association. (n.d.). Retrieved February 25,
2023, from https://www.resolve.org/wp-content/uploads/2022/01/2021-Fertility-Survey-Repo rt-Final.pdf
9. Asplund K. (2020). Use of in vitro fertilization-ethical issues. Upsala journal of medical sciences, 125(2), 192–199. https://doi.org/10.1080/03009734.2019.1684405
10. Crosbie, J. (2022, April 19). America's biggest companies are systematically
short-changing workers. Rolling Stone. Retrieved February 25, 2023, from https://www.rollingstone.com/politics/politics-news/dollar-tree-mcdonalds-low-w age-workers-1339928/
For Victoria Gray, a common cold used to send her into a panic of whether she’d end up in a hospital because of her sickle cell anemia she was diagnosed with as a baby. According to the Mayo Clinic, sickle cell anemia is an inherited disorder that impacts the shape of red blood cells that are responsible for the transport of oxygen throughout the body [1]. Gray has been given a life changing CRISPR gene editing treatment that alleviates the effects of the disease. Now, Gray is able to live her life without pain medication and late-night hospital visits—all because of this new technological development and study [2]. However, CRISPR may present unknown challenges, such as ethical concerns surrounding bodily autonomy, an emphasis on Western perspective, and the possibility of detrimental side effects such as other congenital illnesses if used in utero.
There is currently no cure for the condition, instead just ways to manage symptoms. Those with sickle cell anemia experience severe episodes of pain called ‘pain crises,’ anemia, swelling of hands and feet, frequent infection, delayed growth, and problems with vision [1]. The severity of these symptoms creates a high demand for researching a cure—with 100,000 Americans’ health being compromised by the disease [3].
On a genetic level, sickle cell anemia results from a single point substitution, which CRISPR corrects with extreme precision depending on this specific mutation. [4]. CRISPR gene editing is now being explored as a solution to alleviate the symptoms of sickle cell anemia with the Nobel prize-winning ability to change, disrupt, delete, or correct regions of DNA [4].
Multiple studies performed by Vertex Pharmaceuticals Inc, in collaboration with CRISPR Therapeutics and Stanford Medicine, have made CRISPR able to be administered in a single injection. Stem cells, which are unique in their ability to differentiate into a variety of specialized cells, are taken up from the patient, edited with CRISPR technology, and then injected back into the patient to produce normal, functional cells. The mutation in sickle cell affects the shape of hemoglobin, which shuttles oxygen from the lungs to tissues, and can be restored to its functional state and wild type shape. The editing targets defective cells with the DNA sickle cell anemia mutation by cutting the defective DNA and delivering the correct amino acid to the sequence [5]. Vertex Pharmaceuticals Inc hopes to get this treatment approved by the FDA in late 2023 or 2024 [2].
This single-injection approach to CRISPR can provide a more cost-effective and accessible form of treatment for populations living in poverty as an alternative to expenses of pain management, blood transfusions and frequent hospitalizations. CRISPR can also replace the monthly infusions of donor red blood cells that, according to the Red Cross, utilize 16 million units of blood every year [6]. Infusions are not only painful, but reducing their frequency can alleviate the strain of recent blood shortages as a result of the coronavirus pandemic, with fewer blood donors now more than ever. Therefore, CRISPR technology can eventually lower costs for the healthcare expenditures that can be allocated to other research initiatives.
CRISPR also provides hope for treatment both during and after pregnancy for sickle cell anemia. According to a paper published in the National Library of Medicine, other gene therapies like germline therapies prevent disease through CRISPR injection into eggs and sperm. However, germline therapies are unknown in how they impact fetal development. [7].
When used in utero, one study published in the peer-reviewed medical journal Cell found that Cas9—the enzyme used to cut the DNA—can cause major chromosome loss [8]. This potential outcome could lead to symptoms and diseases worse than what the patient originally had – which poses notable risk to those accepting treatment. If done in utero, this could lead to other congenital disorders [9] leading to the question of if the benefits of experimental treatment, like living pain free, is worth the potential risk of irreversible disability.
In addition, researchers have a very poor understanding of how cells are affected by CRISPR technology. With CRISPR, although created with the intention to be precise, it is often unknown if the target mutation was effectively removed or edited. The types of repair mechanisms that are initiated with CRISPR are not always accurate to create other point mutations. Alternatively, CRISPR uses generic sequences to identify the target mutation. If these nucleotides are very common and can be found in other places of the genome, CRISPR may edit the wrong gene.
With these potential dangers, the patient is not the only one to be considered when providing treatment. We must instead weigh the potential dangers of chromosome damage or loss on the quality of life of the multiple generations impacted by the treatment. Ultimately, CRISPR gives the fetus no choice in whether to accept the treatment, whereas CRISPR modifications made in adults allow the individual to express their bodily and medical autonomy. This brings into question the role of medicine and how it designates sovereignty.
CRISPR also poses ethical concerns due to its ability to preferably pick one gene over another. The new term ‘CRISPR babies’ has developed from concerns for human gene-editing allowing for customized children. Instead of just addressing genetic diseases, many criticize the potential for genetically modifying children to skew the natural variation that comes with sexual reproduction for the ‘ideal,’ ‘healthy’ child. Definitions of health and ‘model children’ may create artificial selection driven by prejudice that unequally values different racial identities. When heterozygous, sickle cell anemia creates a natural resistance to malaria which is prevalent in warm climates, like Africa [10]. Just the treatment of sickle cell anemia based on Western ideas of ‘health’ may create an even larger health crisis and mismanagement of health resources for malaria in Africa. So, although CRISPR can improve well-being and reverse the effects of sickle cell anemia, if done in gestation, it could produce even more vulnerability in African populations. Curing sickle cell anemia may reduce this heterozygosity that presents advantages for survival which would make them more at risk for the deadly effects of malaria. Hence, will CRISPR be used to relieve the symptoms of individuals suffering from sickle-cell, or creating another cover for mismanaged and racialized healthcare?
There are not only unknown risks on the biological level, but also the socal level for future disease applications. However, for the immediate future, this technology could present an exciting step forward for those who suffer and live in fear of viruses and simple discomforts the general population face. This technology—despite its many unknowns and risks—could act as a step in alleviating suffering of many health-compromised populations by providing an efficient, cost-effective treatment alternative.
However, the remaining concerns of CRISPR technologies highlight the question: ‘to what extent should a technology be used to eliminate undesirable traits?’ Who will be deciding the ethical use and removal of these traits? Although CRISPR technologies hold the potential to address global diseases that wreak havoc on the economies and welfare of populations, they also prompt concern for their future abuse and potential side effects. Overall, CRISPR presents a massive leap in the world of gene editing that has the potential to provide relief by addressing the symptoms of sickle-cell. Humanity is now entering into a new frontier of technology where survival is not just of the fittest, but left up to the powerful effects of technology.
References
1. Mayo Foundation for Medical Education and Research. (2022, March 9). Sickle cell anemia.
Mayo Clinic. Retrieved March 28, 2022, from
https://www.mayoclinic.org/diseases-conditions/sickle-cell-anemia/symptoms-causes/syc-20355876
2. Stein, R. (2021, December 31). First sickle cell patient treated with CRISPR gene-editing still
thriving. NPR. Retrieved March 28, 2022, from https://www.npr.org/sections/health-shots/2021/12/31/1067400512/first-sickle-cell-patient-treated-with-crispr-gene-editing-still-thriving
3. Centers for Disease Control and Prevention. (2020, December 16). Data & statistics on Sickle
Cell Disease. Centers for Disease Control and Prevention. Retrieved March 28, 2022, from
https://www.cdc.gov/ncbddd/sicklecell/data.html
4. CRISPR/Cas9. CRISPR. (n.d.). CRISPR Therapeutics. Retrieved March 28, 2022, from
http://www.crisprtx.com/gene-editing/crispr-cas9
5. Stanford Medicine. (n.d.). CRISPR is a gene-editing tool that's revolutionary, though not
without risk. Stanford Medicine. Retrieved March 28, 2022, from
6. US Blood Supply Facts. Facts About Blood Supply In The U.S. | Red Cross Blood Services.
(n.d.). Retrieved March 28, 2022, from https://www.redcrossblood.org/donate-blood/how-to-donate/how-blood-donations-help/blood-needs-blood-supply.html
7. U.S. National Library of Medicine. (2022, March 1). What are the ethical issues surrounding
gene therapy?: Medlineplus Genetics. MedlinePlus. Retrieved March 28, 2022, from
https://medlineplus.gov/genetics/understanding/therapy/ethics/
8. Allele-Specific Chromosome Removal after Cas9 Cleavage in Human Embryos. Cell .
(2020,October29). Retrieved March 28, 2022, from
https://www.cell.com/cell/fulltext/S0092-8674(20)31389-1
9. Wu, K. J. (2020, October 31). CRISPR gene editing can cause unwanted changes in human
embryos, study finds. The New York Times. Retrieved March 28, 2022, from
https://www.nytimes.com/2020/10/31/health/crispr-genetics-embryos.html
10. Parichy, D. (2022, November). Reverse genetics. [Presentation]. University of Virginia, Charlottesville, VA, United States.
According to Penn Medicine, over 70 uterine transplants have been performed globally, providing new hope for women with Uterine Factor Infertility (UFI). Since 2017, institutions like the Penn Transplant Institute and Baylor University Medical Center have pioneered this procedure to provide women struggling with infertility a chance to have biological children.
Penn Medicine describes UFI as a condition for being born without a uterus, not having a functioning uterus, or having had their uterus removed. According to the NHS, a hysterectomy or the removal of a uterus is often considered for those with heavy periods, endometriosis, pelvic inflammatory disease (PID) or cancer of the uterus or ovaries. Baylor Scott & White Health, outlines that candidates for the transplant must have UFI, be a non-smoker, non-diabetic, cancer-free for at least five years, negative for HIV and hepatitis, and be within child-bearing age, 21-40. The donor – either living or deceased – must be HIV, STD free, be aged 30-50 of a healthy weight, cancer-free for at least five years and have no history of diabetes.
Penn Medicine describes a uterine transplant as a lengthy procedure which begins with in vitro fertilization (IVF) treatments to harvest and fertilize the patient’s eggs. The uterus is then transplanted and the patient begins to take immunosuppressants, followed by an embryo transfer, and eventually a hysterectomy to remove the transplanted uterus. The entire process takes between two to five years, and women can have up to two children under clinical trials.
UFI affects 5% of all women worldwide. Addressing it is a monumental step towards providing women with more opportunities to have biological children, according to Baylor Scott & White Health. In addition to cis-gendered women, future uterine transplants may provided more reproductive freedom for transgender women who have undergone gender confirmation surgery, according to a recent 2019 study in the U.K. published by the JAMA Network.
In the same 2019 study surveying transgender women in transgender support groups, over 90% indicated that a uteran transplant would increase their happiness, feelings of femininity, and address gender dysphoria. Access to new technologies for non cis-gendered individuals can break down barriers in healthcare that traditionally cater to cis-gendered people. Transgender individuals are often deprived of fertility preservation counseling and limited in their access to IVF – leaving countless uninformed about assisted reproductive technologies.
Not surprisingly, social issues come into play. Although the movement towards more innovative technologies improves the wellbeing of those who are non cis-gendered or those who may be infertile, uterine transplants highlight existing societal and racial inequalies.
As a white woman, I have an inherent bias towards favoring uterine transplants in those who share both my race and socioeconomic status. Therefore, it is important that I take ample time to realize how reproductive technology may disproportionately impact certain women of color.
The highest rates of U.S. poverty are experienced by African American, Native American, Alaska Native and Latina women, according to the Center for American Progress. The wealth gap that places women of color in lower socioeconomic environments, prevents access to quality education, healthcare and job opportunities. This often prevents them from accessing invasive, expensive, and new technologies that expand their reproductive choices.
On average, IVF costs between $8,000 to $13,000 per round without medication– effectively limiting low income women from accessing reproductive technologies, according to the Pacific Fertility Center in Los Angeles. Additionally, the use of immunosuppressants – which according to the Cancer Research Institute, causes nausea, increased risk of infection, loss of appetite, vomiting, etc. – may deter women who work full time, work multiple jobs, or have limited opportunities for leave from participating. During the recent pandemic, the increased risk for infection and potential for dangerous exposure to COVID-19 may be a risk many working women of color facing poverty are unwilling to take.
In her novel Intimate Justice: The Black Female Body and the Body Politic, Shatema Threadcraft discusses how women of color have often historically been targeted by coerced sterilization, encouraged to take birth control to reduce their fertility, and have deemed ‘welfare queens’ who through motherhood take advantage of welfare programs. This has culminated in an ingrained pattern in American healthcare to effectively maintain white reproduction. New expensive procedures like uterine transplants are institutionally marketed towards upper-middle class white families which in turn prevents reproduction for women of color who struggle with infertility.
The inaccessibility of many treatments can also raise the question of if uterine transplants should be covered by subsidized healthcare. For example, in states like California, Medicaid explicitly covers transgender services, which according to the State of California Health and Human Services Agency includes, “psychotherapy, continuous hormonal therapy, labratory testing to monitor hormone therapy and gender reassignment surgery that is not cosmetic in nature.” Within this definition, uterine transplants to aid gender dysphoria should be made more accessible through government-funded programs like Medicaid in states like Colorado, California, Connecticut, Delaware etc. If these services are not provided through federal funding, this highlights the broader issue of a lack of bodily autonomy for people of color, those below the poverty line, and LGBTQ+ members.
Overall, uterine transplants present unmatched opportunity for transgender or infertile women to participate in expansive fertility options. However, the inaccessibility of these technologies consistently put women of color or those in poverty at a disadvantage when taking control of their reproductive autonomy. Uterine transplants are just one example of modern biomedicine highlighting social inequity. This can beg the question if novel assistive technologies perpetuate modern day eugenics by encouraging white reproductive choice, whilst alienating the conception of Black, LatinX or Native children.
References
Healthcare Laws and Policies: Medicaid Coverage for Transition-Related Care. 10 Dec. 2021, https://www.lgbtmap.org/img/maps/citations-medicaid.pdf.
Hysterectomy - Why it’s necessary - NHS. (2019, February 9). NHS. https://www.nhs.uk/conditions/hysterectomy/why-its-done/
Immunotherapy Side Effects - Cancer Research Institute (CRI). (n.d.). Cancer Research Institute. Retrieved March 13, 2022, from https://www.cancerresearch.org/en-us/immunotherapy-side-effects
Penn Uterus Transplant Program. (n.d.). Penn Medicine. Retrieved March 13, 2022, from https://www.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/penn-fertility-care/uterus-transplant
Perceptions and Motivations for Uterus Transplant in Transgender Women | Pediatrics | JAMA Network Open | JAMA Network. (2021, January 20). JAMA Network | Home of JAMA and the Specialty Journals of the American Medical Association; JAMA Network. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2775302
Ross, L., & Solinger, R. (2017). Reproductive Justice. Univ of California Press.
Sahakian, V. (n.d.). The Cost of IVF in California. Pacific Fertility Center of Los Angeles | Top-Rated IVF Clinic. Retrieved March 13, 2022, from https://www.pfcla.com/blog/ivf-costs-california
The Basic Facts About Women in Poverty - Center for American Progress. (n.d.). Center for American Progress; https://www.facebook.com/americanprogress. Retrieved March 13, 2022, from https://www.americanprogress.org/article/basic-facts-women-poverty/
Threadcraft, S. (2016). Intimate Justice: The Black Female Body and the Body Politic. Oxford University Press.
Uterus Transplant | Baylor Scott & White Health. (n.d.). Welcome to Baylor Scott & White Health. Retrieved March 13, 2022, from https://www.bswhealth.com/uterus-transplant/