Access to A.R.T. for Women of Color
Access to A.R.T. for Women of Color
You Get a Baby! You Get a Baby! Not Everyone Gets a Baby: The Ethics of Inequities Within Assisted Reproductive Technologies for Women of Color
By Rhyan Brown
Many people view having children as a natural part of life. However, due to certain factors, this may not be natural for everyone. Numerous people who are struggling with infertility turn towards assisted reproductive technologies for help but, not everyone who needs these technologies can access them. This paper will discuss the ethics of inequities within access to assisted reproductive technologies specifically for women of color. Additionally, it will analyze the ethicality of reproductive technologies while looking through a consequentialist lens.
Table of Contents
- Overview & Background Information
- Preventative Factors
- Ethical Question & Principle
- Ethical Analysis
Humans have a natural predisposition to reproduce and continue their own population growth. But what happens when a person cannot reproduce naturally due to a host of infertility issues? In the United States, 1 in 5 women struggle with infertility which is the inability to become pregnant after one year of unprotected sex. In many situations, an option would be to look towards assisted reproductive technologies or A.R.T.. However, the cost of these procedures can be extremely prohibitive, and thus limiting access to care. Additionally, few employers offer health insurance that will even begin to cover the cost necessary for these procedures. Considering that the demand for A.R.T. use is increasing, even though prices are becoming more costly, several ethical questions can be raised. What types of people have access to A.R.T. and what types of people do not? Is it problematic that only some people have access to A.R.T.? Should reproductive technologies be accessible to everyone when there are other options available like adoption?
Overview & Background Information
This paper will discuss inequities within healthcare that have been illuminated as a result of the use of Assisted Reproductive Technologies (A.R.T.). Specifically, I will be focusing on the inequitable access to A.R.T. treatment for low income women and women of color in the United States. These inequities are due to numerous reasons but some of the most influential causes are unaffordable pricing, societal pressures, and racial stigmas that influence the quality of healthcare. From this, I will be analyzing how women of color are impacted. In addition, I will look at how restrictive factors of A.R.T. are impacting American society as they may appear to be a form of social engineering. Finally, I will consider these elements throughout the consequentialist framework while analyzing the ethical values of equity and responsibility.
According to the CDC, assisted reproductive technology (A.R.T.) “includes all fertility treatments in which either eggs or embryos are handled.” (CDC) Common examples of A.R.T. include in vitro fertilization (I.V.F.), surrogacy, and gamete intrafallopian transfer. Many couples choose to use A.R.T. because of infertility. A.R.T. is also a resource for individuals who want to become single parents as well as same-sex couples who otherwise would be unable to have biological children. In this paper I will be focusing on two types of reproductive technologies, first, I.V.F.. In-vitro fertilization or I.V.F. is typically a process where an egg is fertilized outside the body and then placed into the lining of the uterus where it is hoped to implant itself and develop into a full-term pregnancy. I.V.F. is one of the most popular fertility treatments and it has been used in the United States for the past 40 years. The second type of reproductive technology that I will be focusing on is surrogacy. Surrogacy is an arrangement where a surrogate mother will carry and deliver a baby on behalf of a person or couple. Surrogacy is also known as third party parenting and can be divided into two categories: traditional & gestational. In traditional surrogacy, the surrogate mother provides both the womb and the egg, which therefore, makes her the biological mother of the child. The sperm may be from the intended father or from a donor but, whoever it is from would be the biological father. In gestational surrogacy, the gametes will be provided either by intended parents of the child or donors. Once the egg is fertilized, the embryo is placed in the lining of the surrogate’s uterus and the surrogate will carry it to term. After the baby is born, it will be handed over to its intended parents. Regardless of if the gametes are from the intended parents or from donors, the surrogate will have no biological relation to the child.
Parenthood Rights & Equity
A.R.T. treatments have helped countless couples and individuals start families and become parents. These procedures are important because everyone should have the right to have children. Right?
“Every human being shall have the right to become a parent or to have children since they possess such desires naturally which is one of the basic requirements to live a life with human dignity.”– Social Science Research Network
Besides circumstances in which sterilization has taken place or other events have occurred, fertile couples are able to have as many children as they would like, with limited restrictions. Whereas those who cannot conceive on their own are unable to do the same due to preventative elements or simply restrictions in general. The American Society for Reproductive Medicine explains that, “Fertility programs can withhold services if there are signs that patients will not be able to care for child(ren).” They continue to say that “ Services should not be withheld without good reason and it should happen only after a careful assessment has been made by the clinical team.” (American Society for Reproductive Medicine) Although the intent behind clinical teams is essentially positive, it may have unintended negative consequences. If healthcare services are being withheld, it brings up the question of what criteria is being used to determine that someone would be an “unsuitable” parent? For example, if there is an infertile couple or an individual that wants to use reproductive technologies but lives in poverty and cannot afford them due to a lack of insurance coverage, should they be prohibited from having children all together? Is suitability based on what can be provided for the child physically, like food, clothing or shelter? Or, is it based on the amount of affection and attention the child receives? Even if the parents were to show immense affection and attention towards the child, is that enough? If infertile parents cannot provide their children with necessities like food and shelter should A.R.T. be the barrier? All of these questions are legitimate but they are questions that fertile couples do not have to answer. That is why this brings up the value of equity. Equity means providing people with resources or assistance that they individually need in order to succeed. Therefore, reproductive technologies are incredibly important because they are creating a more equitable environment for those that can access treatment. However, despite the fact that assisted reproductive technologies are promoting equity, they are far from equitable.
On average, IVF treatments usually cost between $15,000 – $22,000 per cycle. This price excludes necessary treatments that are catered towards the patients individual needs, as well as fertility drugs and testing which can add around another $3,000 per cycle. Typically three rounds of treatments are optimal for a successful pregnancy and this roughly adds up to a minimum of $54,000. On the other hand surrogacy fees cost between $30,000 – $60,000. With the additional necessary costs, including legal fees and insurance, the price goes up. Additionally, in the case of an IVF surrogacy, fees including gamete donation, embryo creation, and potential other costs, create an average expense between $100,000 – $230,000. Obviously, most people do not have the financial means to pay for the entirety of these procedures. Depending on the individual or couple’s insurance, some of the price may be covered. However, few employers offer health insurance that will even begin to cover some of the cost necessary for these procedures. According to the N.J. administrative codes, in New Jersey, most insurance providers are required to provide infertility coverage to the same extent as other pregnancy related procedures except, for limiting infertility coverage to four completed egg retrievals per lifetime. (state.nj.us) In many other states however, IVF is not covered by insurance laws at all. In terms of surrogacy, very few employers or insurance companies will cover the cost. Some may decide to cover certain portions of the cost. But for the most part, once the surrogate is pregnant, the prenatal care is paid for by the intended parents. Even though the demand for A.R.T. is increasing, the price of treatment is rising as it becomes more popular. According to CNBC, “About 80% of people who underwent IVF fertility treatments in 2018 had hardly any or no [insurance] coverage.” (CNBC) These factors create a difficult situation for numerous families and eliminate the option of reproductive technologies, completely, for many others. Considering these statistics, it is also unsurprising that in the United States, while fertility issues affect about 6.7 million women, it is estimated that currently only 24% of A.R.T. needs are being met. This alarming percentage only scratches the surface of inequities within this field of healthcare.
While accessing reproductive treatments is financially challenging for many people, for women of color, accessing care can be even more difficult. Black women specifically, have an especially challenging time obtaining treatment. Studies show that black women are twice as likely to experience fertility issues compared to white women. However, they are half as likely to receive reproductive assistance which would allow them to have biological children. A recently conducted survey involving 1,460 patients at Northwestern Center for Fertility and Reproductive Medicine in Chicago, IL, broke down some disparities within A.R.T.. Of all the participants, 72% were white, 21% were Hispanic or Other, and 7% were Black. Moreover, most participants reported that they had a bachelor’s degree or higher and 81% of them had an annual household income of more than $100,000. The survey also examined the barriers that prevented people from receiving fertility care. One barrier was the distance that patients had to travel in order to reach the clinic. The survey showed that the median distance that patients traveled to the clinic was 5.8 miles. For black patients and patients with a household income below $100,000 though, they traveled twice as far as white patients and patients with household incomes above $100,000. (Northwestern Center for Fertility and Reproductive Medicine) This shows that clinics offering this type of care tend to be in more affluent areas because it is assumed that the clientele can afford the treatment. However, putting clinics in these areas makes accessing treatment ever more challenging for individuals not in close proximity to these areas. Because fertility treatments are ongoing, frequent visits to the clinic would be necessary and this could be difficult. These demographics mimic those from clinics around the country and this is definitely a cause for concern. In 2021 however, the U.S. Census Bureau report provided some clarity for the results. During that year, the average household income for white Americans was $105,804. For Hispanic Americans it was $80,879, and for black Americans it was $71,528. These incomes clearly show why some people can afford to pay the out of pocket expenses while others are unable to. Based on this evidence, Northwestern Center for Fertility and Reproductive Medicine found that black people were twice as likely as white people to report income level, the main barrier to accessing care.
Not everyone has trouble affording care or being in proximity to a clinic but, that does not mean that they do not have trouble receiving it. Aside from financial components, an additional disabling factor, for individuals and couples of color, is the lack of available gametes. The article, Sperm donors are almost always white, and it’s pushing Black parents using IVF to start families that don’t look like them from Insider tells the story of two women, Angela and Keesha that hoped to become mothers. Angela, an Irish-Arab-American, began looking for sperm donors through a cryobank when she decided that she wanted to become a single mother. In the article she explains that because of her race, she wanted a Caucasian donor. After adding Some more filters, Angela found that she had a wide variety of donors available to her. Once she had explored the extensive list, she finally chose a donor that she felt a connection with. For Keesha however, finding a donor was not as simple. Keesha, an African American woman experiencing infertility had tried multiple times to get pregnant. After three miscarriages, she and her husband Eric, decided that finding a donor would be the best option. Similarly to Angela, Keesha began her search online and entered filters for black donors, as she wanted her child to resemble her and her husband. However, unlike Angela, Keesha’s options were severely limited. She did not have the “luxury” of reviewing profiles or forming a connection with one of them. Instead, she was given two options. When one of them backed out, she was forced to choose between an African American donor with only one frozen egg or Caucasian donor. Keesha and Eric’s experience was certainly not unique to them. A recent review of one sperm donor registry in California revealed that of the available sperm, 44% was from white donors and only 3% was from black donors. (cryobank.com) Additionally, a review from an egg donor registry revealed that 70% of the available eggs were from white donors, but only 14% of available eggs were from black donors. (eggdonoramerica.com) These percentages resemble those from around the country and confirm the fact that the lack of diversity of gamete donors is one more reason why several women of color struggle to obtain access to A.R.T.
Racism & Bias Within Fertility Care
Continuing with the theme of race, another factor that prohibits black women from obtaining reproductive healthcare, is rooted in racism. In the 2020 article, For Black Women, the Isolation of Infertility is Compounded by Barriers to Treatment, from Stat News, reproductive endocrinologist, Michael Thomas explains:
Far too many women of color seek infertility care much later than they should, when it can be harder to help them conceive. There are many reasons for the delays…Some can’t afford treatments, some put it off because they’re busy. But many Black women simply don’t get referrals to specialists or are told erroneously by their gynecologists that Black women can’t be infertile.– Stat News
Unfortunately, the distrust of doctors within the black community is not anything new. From misconceptions about the pain tolerance of black women that sprouted from slavery, as well as other racist ideologies that dismiss the concerns of black patients, they are reluctant to seek care. Rev. Stacey Edwards-Dunn, a minister who founded the support group, Fertility for Colored Girls, explains, “ …many Black women she counsels have been reluctant to turn to physicians for help because of a deep distrust of the medical establishment, especially in areas of reproductive health.” She adds, “We don’t trust many doctors. Look at J. Marion Sims, they call him the father of gynecology and he practiced surgery on enslaved women without anesthesia. Look at the Tuskegee experiments.” (Stat News) Countless black women are extremely reluctant to even visit a doctor’s office in fear of being disregarded or having a negative experience. As for reproductive assistance, because this treatment is “not medically necessary” many women will continue to push it off. For many of those that do visit, their fears become a reality. L’Oreal Thompson Payton is an individual that struggles with infertility. After visiting a clinic with her husband Jeff Payton she found that “infertility services have long focused overwhelmingly on white women.” She goes on to explain, “Literally, we are the only Black couple in the waiting room. You look at the photos of the babies on the wall and don’t see any melanin anywhere, not even a speck…It takes this already isolating experience and makes it so much worse.” (Stat News) It is frequently evident that patients of color have unfavorable experiences with medical personnel due to false beliefs, biases, or just plain ignorance. Nonetheless, it is also evident that white patients tend to have more positive experiences because these treatments have been focused and designed for them.
External racism has created an internal stigma that stems from Black culture. Historically, Black people were expected to be “strong” individuals that were pretty much emotionless. Sprouting from false beliefs during the time of American slavery, numerous misconceptions about black bodies were created and have integrated themselves into the Black community. Rev. Edwards-Dunn also states, “There are these myths that Black women are supposed to be hyper-fertile, baby-making machines…” Because of these beliefs, many Black women struggling with infertility feel alone and a sense of shame. Historic misconceptions led black Americans to believe that they should not ever need help and that they should solve their own issues. As a result, they withhold speaking to family or friends in fear of not being taken seriously or being condemned. Oftentimes because they believe that discussions about topics like infertility are a sign of weakness and are not culturally accepted. Ultimately, multiple Black women will continue to hold out on seeking care, even if they can afford it, solely because of these unfortunate circumstances.
Regardless of the reason behind why a person may put off treatment, waiting too long can have negative outcomes, particularly for individuals planning to pursue I.V.F.. A result of seeking care too late is having lower I.V.F. success rates. The older a person gets, the worse their chances are of having a successful, live birth through I.V.F..
I.V.F. for Black Women
Sadly, women of color statistically have even lower I.V.F. success rates, even if they receive care in a timely manner. A recently conducted study funded by the New England Fertility Society revealed substantial data. The study that was based on information from the United States national eIVF database, included data from 40,545 patients. 62% were White, 15% were Asian, 7.3% were Hispanic/Latinx, and 6.4% were Black. From this data, researchers found that patients of color had significantly higher rates of miscarriages compared to White patients, after I.V.F.. Zooming in on Black patients, it was discovered that they had significantly lower clinical pregnancy rates compared to all other races and, the odds ratio for live births for them was 30% less than that of White patients. The study concluded that:
Black women have worse IVF outcomes than women of all other racial backgrounds undergoing IVF. The factors associated with the disparate outcomes of Black women undergoing IVF outcomes include older age starting IVF, higher body mass index, tubal factor infertility, and diabetes.– Disparities in Access to Fertility Care: Who’s in and Who’s out?
While some of these factors are innate and unalterable, not all of them are specific to black patients. There are plenty of patients of other races with higher body mass indexes and diabetes that have higher IVF success rates. (Factors Associated with Disparate Outcomes Among Black Women Undergoing In Vitro Fertilization) This proves, yet another inequity within this line of care: fertility treatments are not catered to meet the needs of all individuals who need them.
Ethical Question & Principle
Considering the entirety of elements discussed in this paper, I am brought to the question of: If everyone cannot access assisted reproductive technologies, should anyone access them?
While attempting to answer this complicated and intricate question I have chosen to look at the ethical principle of nonmaleficence. According to the University of Washington Department of Bioethics and Humanities, “The principle of nonmaleficence requires of us that we not intentionally create harm or injury to the patient, either through acts of commission or omission.” (University of Washington Department of Bioethics and Humanities) Taking nonmaleficence into account, one solution to the issue would be to continue the use of A.R.T. to allow those that can access it, to have children of their own. By doing so, patients who can access care would not be emotionally harmed or feel that the only possibility of them having biological children is being taken away. Alternatively, all A.R.T. use could be ceased in order to create a more equal environment where no one has an unfair advantage. By doing this, patients who are not able to access treatment would not feel excluded. In these situations though, either decision that is made would negatively impact a stakeholder to an extent.
When it comes to assisted reproductive technologies, the value of equity is crucial in order to ensure that quality treatment is being provided. I am considering the value of equity because I have looked at the large populations of people that don’t even have the chance to receive this care. This value considers the fact that not everyone has the same starting point and says that people should be provided with the assistance that they as an individual need to succeed. Equity in this context means that everyone who needs reproductive assistance should have access to it. However, as discussed previously, this is not currently the case. While looking at required expenses, racial bias, and other discouraging barriers, it is evident that oftentimes these treatments are exclusive to a certain group of people that tend to be wealthy and/or white. In addition to factors like a possible lack of insurance coverage and the limited diversity of gamete donors, an inequitable environment has been created for individuals and families of color.
Equity ties into the second ethical value that I am analyzing which is responsibility. This value means that a person or a group of people has the duty to be accountable for someone or something within their control. In the context of reproductive technologies there is a question of who currently has responsibility, and who should have the responsibility to assure that this field of healthcare is equitable? If the use of assisted reproductive technologies were to be continued, should health care facilities, donor clinics, surrogacy agencies and doctors all have the responsibility to alleviate racial disparities within their organizations? If so, who has the responsibility to ensure that this is done? Does American society have the responsibility to make sure that treatment is equitable and accessible? Should state or federal governments step in to provide financial assistance, or is that inappropriate? If funding were to be provided, where would the money come from? Should a portion of taxpayer dollars go towards subsidizing prices for individuals in need of reproductive care? If so, how will this affect taxpayers that don’t support their money going to this cause? All of these difficult questions are ones that need to be answered before the standard of reproductive care can improve. This leads me to the ethical framework that I have chosen to look through which is consequentialism.
Consequentialism is an ethical framework that determines the morality of an action, solely based on its consequences. Looking at this issue of equity and responsibility through a consequentialism framework, it is imperative to think about what some potential negative consequences would be if A.R.T. was continued as is and no alterations were made. Based on the previously provided information, it is undeniable that A.R.T. is not accessible to everyone who needs it. When this boils down, reproductive care providers essentially have the capability to influence the amount of black patients that receive treatment versus the amount of white patients receiving treatment. The enforced restrictive components have caused serious racial disparities in this field of care. As a result of these components, assisted reproductive technologies could be perceived as a form of social engineering, which is defined as an effort to influence certain desired behaviors from societal groups in order to achieve a particular goal. However, due to the numerous amount of societal forces and the variety of them, this is most likely not the case. Instead, it is a multitude of coincidences, individually based on systemic racism.
The Cambridge Dictionary defines this term as, “Policies and practices that exist throughout a whole society or organization, and that result in and support a continued unfair advantage to some people and unfair or harmful treatment of others based on race.”– Cambridge Dictionary
This systemic racism creates unfortunate circumstances that happen to target several Black Americans. This very well may not be the intention of reproductive technology health care professionals but, Black Americans end up being greatly excluded from accessing treatment. Using the framework of consequentialism to analyze this situation is significant because although the future cannot be predicted, it is reasonable to believe that the racially disproportionate use of A.R.T. can result in a racially disproportionate demographic of children. Additionally, if A.R.T., is allowed to continue without any alterations, reproductive care will continue to get progressively worse. Therefore, the ethical framework of consequentialism would declare that it is unethical for the use of A.R.T. to continue if not all those in need can access it.
In summary, assisted reproductive technologies are a very complex resource that is difficult to navigate. To reiterate what I discussed in my paper, these technologies are constantly inaccessible to Black Americans. Those who are able to access them, oftentimes have to make it past enormous obstacles. America’s current reproductive healthcare system is clearly extremely problematic. As I explored options to find a solution, I continued to consider the values of equity and responsibility while using the ethical principle of nonmaleficence, and looking through a consequentialist framework. I am aware that the couples and individuals who are able to access reproductive treatment benefit immensely from it because they are able to potentially bring their own biological children into the world. I am also aware that these procedures have been used for a considerable amount of time and have helped so many families in the past. However, I am also aware that there are so many families out there who are currently having unequitable experiences that are solely based on race. Reflecting back on my ethical question: If everyone cannot access assisted reproductive technologies, should anyone access them? I am contemplating an answer to this question and several possible solutions to this issue. I believe that because assisted reproductive technologies have become so complicated, that it would be even more problematic to prevent everyone from treatment Because while this would be equal it would not be equitable. I also believe that in time this “solution” would produce more negative consequences. Although I have not come to a solid decision on how to alleviate these problems I think that it might be beneficial for the government to step in more than it already has. Equity within this field of healthcare is a pressing issue and it should be handled by state governments because they have a closer relationship with their citizens and a better understanding of their needs. If state governments were able to put aside money to support those in need of reproductive assistance, or built more reproduction clinics in a multitude of areas to support patients, this would be a step in the right direction. These small steps will add up and while they are working to create a better environment for patients, more will need to be done. I know that someday America’s reproductive healthcare system will need to be rebuilt with a new foundation. This time, it should include all different types of people from all different types of backgrounds to ensure that the healthcare provided will be suitable for all patients. In addition to this, healthcare providers will need to receive a more well-rounded education, specifically about patience of color in order to be able to care for them properly. In doing so, it would result in a better environment for black patients in need of reproductive assistance and, patients in need healthcare assistance in general, which would be a positive consequence.