Over the past decade, the advent of CRISPR technology (which has the capacity to edit human genes at a fraction of the time and cost of earlier methods) has turned the world of bioethics upside down. We suddenly have the capacity to edit our genes—not only those in our own bodies but the genes that we pass down to all future generations—in ways that were previously relegated to science fiction. Questions arise: Is this playing God? Should it be limited, or regulated, or stopped altogether? On the other hand, what amazing advances could we now make in alleviating genetically based diseases and ending the associated pain, suffering, and even premature death for ourselves and our descendants? What can we do, and, more vexingly, what should we do?
One of the first actual applications of CRISPR to address a disease has recently received FDA approval for use in patients: Casgevy, a CRISPR-based gene therapy developed by Vertex Pharmaceuticals, a Boston-based biotechnology and pharmaceutical company, to treat sickle cell disease.[1]
Numerous ethical issues and historical injustices have arisen in the context of sickle cell disease and its treatment. The purpose of this essay is to sketch a theological account of bioethics based in a Christian theological anthropology as a framework for considering these issues, both in their historical context and also in order to analyze how more recent technological innovations in the treatment of sickle cell disease may (or may not) be able to address them. I focus on ethical questions surrounding therapeutic approaches to sickle cell disease—both traditional pain management and newer genetic approaches that present the possibility of a cure. The theological account of bioethics presented here stands in contrast to other ethical frameworks that have been applied to the treatment of sickle cell disease and attempts a more holistic approach to the wellbeing of persons with sickle cell disease, focusing not only on physical wellbeing (pain, life expectancy) and the economic costs and benefits of therapy but also on spiritual wellbeing (virtue and character). The purpose of such an account is to provide a framework within which to approach ethical questions surrounding care and cures for sickle cell disease that fully respect the humanity of those who suffer from it. I will first review existing ethical frameworks that have been employed for thinking about sickle cell disease, the past ill-treatment of those who have suffered from it, and ethical questions surrounding new innovations in its treatment. After noting some of the shortcomings of existing ethical accounts, I will lay out a theological account that seeks to overcome them.
Sickle cell disease (SCD) is caused by a single genetic mutation that results in adult hemoglobin (blood) cells deforming into an irregular “sickle” shape. This degrades the capacity of the cells to carry oxygen in the bloodstream and also causes them to get stuck in blood vessels, obstructing blood flow.[2]
Symptoms associated with sickle cell disease include “anemia, acute and chronic pain, infections, pneumonia and acute chest syndrome, stroke, and kidney, liver, and heart disease.”[3] Persons with sickle cell report suffering frequent “pain crises,” described as severe episodes of pain that feel like broken glass running through one’s veins or a chisel taken directly to one’s bones.[4] The CDC and other sources estimate that in the United States, life expectancy for those suffering from sickle cell disease is more than 20 years shorter than the average life expectancy.[5]
Sickle cell disease results only when two copies of the mutated gene are inherited, one from each parent. An individual carrying only one copy of the mutation will not develop the disease; if two parents each carry one copy of the mutation, there is a one in four chance that the child will inherit the mutation from both parents and suffer from sickle cell disease.
Sickle cell disease affects millions of people, particularly those with ancestry derived from regions where malaria is highly prevalent, such as sub-Saharan Africa, India, and the Mediterranean region. The mutation provides some degree of protection against malaria, giving it an adaptive advantage in regions where malaria is common.[6] The result of this is that the majority of those suffering from sickle cell disease in the United States are African American. According to the CDC, “Sickle cell disease (SCD) affects about 100,000 people in the United States; more than 90% are non-Hispanic Black or African American, and an estimated 3%–9% are Hispanic or Latino.”[7] It should be noted that this article largely approaches questions about sickle cell disease from an American perspective, which admittedly leaves untreated important questions of global justice: 80% of patients worldwide live in sub-Saharan Africa.[8]
Sickle cell disease has become intertwined with some of the deepest and most painful instances of injustice in the American healthcare system. Black Americans and other people of color in this country have long suffered discrimination at the hands of the medical establishment. Historical travesties such as the Tuskegee Syphilis Study[9] and the forced sterilization of Puerto Rican women in the late 20th century[10] have given rise to a deep and understandable mistrust of the healthcare system, such that minorities in the U.S. are less likely to avail themselves of medical services. When sickle cell sufferers do attempt to seek medical care, the fact that they may present no symptoms other than their own subjectively reported (and debilitating) pain means that they frequently report being disbelieved and given low priority for care. Haywood, citing Bergman and Diamond, notes that there are no definitive quantitative measures that can indicate the presence of a pain crisis, which means that clinicians must simply believe the patient’s self-report of pain. In this situation, stereotypes, including implicit biases, can degrade the level of trust a clinician puts in the patient’s testimony, which of course damages the level of trust sickle cell patients are willing to place in the health care system. The result is both a reduction in the quality of care received by sickle cell patients and a persistent degradation of the compassion and respect they are shown by the health care establishment.[11]
Stereotypes operative at the clinical level include the belief
that African-American patients compared to white patients are likely to have less education, are less likely to be the kind of person they could see themselves being friends with, that they are less likely to adhere to medical recommendations, and that they are more likely to abuse drugs or alcohol . . . . Particularly troubling for SCD patients is the mistaken belief carried by many clinicians which holds that SCD patients experience high levels of addiction to the narcotic medicines used to treat their pain.[12]
Haywood characterizes stereotyped attitudes held by clinicians about sickle cell patients as “a lack of respect”:
Clinicians fail to show respect for SCD patients when they devalue them, or when they fail to recognize them as individuals by stereotyping based on race or some other feature of their disease (e.g. by assuming that they are addicted to their pain medications). Clinicians fail to show respect for SCD patients when they verbally or symbolically reduce them to some aspect of their biology rather than recognizing them as a unique individual with a particular experience of their disease. For example, spend any time on a medical unit in which persons with SCD are treated, and one will likely hear reference to the “sicklers” currently on the ward, or the “sickler in the room at the end of the hall.”[13]
Because clinicians subject to implicit bias or other subconscious forms of stereotyping may not realize there is an ethical issue at hand, Haywood recommends not only voluntary ethics consultations but also extensive education, elucidating the struggle of sickle cell disease patients and the injustices in their treatment within the healthcare system. In other words: restore to sickle cell patients the respect they are due as human beings.
At a systemic level, sickle cell disease has received relatively low levels of research funding,[14] even as advances in genetic engineering and the fact that sickle cell results from a single genetic mutation make the disease a good candidate to be addressed by gene editing techniques such as CRISPR.[15] More recently, a new CRISPR-based genetic therapy has been developed to address sickle cell disease. Following trials, it was first delivered to a woman named Victoria Gray.[16] It has now been approved by the FDA and is being marketed by Vertex Pharmaceuticals. The treatment is highly arduous. The way it works is to harvest stem cells that produce blood cells from the patient’s bone marrow, edit them so that they produce the fetal form of hemoglobin rather than adult hemoglobin, and then return them to the patient’s body. Fetal hemoglobin does not sickle, even in those with sickle cell disease, so in principle, this change represents a cure—but it requires all of the patient’s bone marrow to be replaced with the edited version, a painful, time-consuming, and very expensive procedure (estimates of the cost are in the millions of dollars per patient). One patient reported that he “underwent weeks of chemotherapy to clear out old, faulty stem cells from my body and make room for the newly edited ones,” spending a total of 17 weeks in the hospital.[17]
In a paper titled “Ethical Issues in the Management of Sickle Cell Pain,” Samir K. Ballas summarizes current ethical approaches to sickle cell disease. Ballas discusses two types of ethical theories, each of which emphasizes a single principle:
Historically two controversial types of ethical theories concerning human actions, including pain management, prevail. The first is utilitarianism, that stipulates that no action is good or bad in itself but acquires moral value only in terms of the consequences it provides (i.e., the end justifies the means). Thus, if management of sickle cell pain is not cost-effective, abandoning patients with sickle cell disease is appropriate according to utilitarianism. The second theory is Kantianism, a deontological duty-based theory that stipulates human actions are good or bad in themselves irrespective of their consequences. According to this theory management of sickle cell pain becomes an imperative irrespective of cost. Needless to say these two theories have substantial problems in practical applications.[18]
Utilitarian approaches can be problematic when it comes to safeguarding the human dignity of all persons. Utilitarianism requires that a calculation be made, implicitly or sometimes explicitly, that trades off the health and wellbeing of some human beings over against that of others and finds that if the result of a given policy is positive on net, then it is worth pursuing. This approach can be critiqued in two ways. First, any calculation of the net impact of a given policy can be disputed by challenging the values assigned to the lives or health of particular individuals or the method used to calculate social welfare (Should individual welfare simply be summed across individuals? Do all individuals receive equal weight? What about the welfare of future individuals? Etc.). But second, and more fundamentally, utilitarian approaches will always be subject to the significant concern of being reductive, as they inherently quantify social welfare in ways that focus the attention only on what can be measured and calculated. Moreover, measures of social welfare are usually constructed from outcomes that are independent of any consideration of the character or virtue of the human beings involved.
Notice that the dilemma Ballas is pointing to is the difficulty of how and whether to do a cost-benefit analysis. Consequentialism attempts cost-benefit analysis, and the concern is that it could overestimate cost, underestimate pain, or otherwise erroneously decide that pain management “isn’t worth it.” Deontological approaches, on the other hand, will not make this mistake, but only because they simply ignore cost; Ballas’ concern is that there must surely be some point at which it really is the case that the cost of managing pain does not warrant doing so. Ballas, then, is presumably after a better and more accurate way of doing cost-benefit analysis. This essay argues, however, that conceiving of the problem in this way focuses reductively on the costs of pain and of managing pain; it ignores everything else about the persons under consideration, such as their character and their communities. A theological approach to bioethics, grounded in a Christian account of what it means to be human (i.e., theological anthropology), is better able to attend to a richer and more holistic understanding of persons.
Ballas then proceeds to consider what he calls “common-morality theories,” which “are pluralistic without an overriding single principle, but with two or more nonabsolute (prima facie) principles from the general level of normative statement, that can be applied to concrete clinical situations.”[19] Common morality theories have been put forward by ethicists in preference to single-principle theories, such as utilitarianism and deontological theories, and are more commonly used in clinical practice. They aim for a balanced pursuit of multiple principles, even though these may conflict with one another in practice. Ballas mentions four such principles, advanced by Beauchamp and Childress[20]:
The point of common-morality theories is to do justice to the complexities of ethical questions that single-principle theories fail to address. However, they do not provide much in the way of direction concerning how to weigh principles against one another when they conflict. For example, they provide no guidance to a clinician responding to a patient requesting treatment for pain management when the clinician has concerns about the potential addictive properties of such treatment. Such guidance requires a fuller account of the ground of human dignity, something that a theological account is better equipped to provide. Each of the four principles mentioned by Ballas is consistent with a theological account of human dignity, but such an account can also help navigate the conflicts that arise between them, including those that seem to pit individuals over against their communities.
For the theological account of bioethics that I will present here, I largely follow the account of moral theologian Oliver O’Donovan as laid out in his seminal work Resurrection and Moral Order and his lectures of a few years earlier, published as Begotten or Made?, which focus specifically on bioethics (the original context for these lectures was the question of artificial reproductive technologies such as IVF).[21]
A theological account applied to sickle cell disease makes three theological claims with three direct implications. The first claim is that God’s act of creation is an act of ordered love, reflective of the character of God as creator. The implication of this statement is that humans acting within creation must respect that order, seeking to conform their own actions to the love that orders the sphere within which they act.
For O’Donovan, creation is complete. This does not mean that it is perfect or unchanging. Rather, it means that it is ordered by the love of a God who is perfect and unchanging. Ethics pertains to our actions within a world that is in constant flux, but it takes its principles and its ultimate ends (its telos, in Greek) from an ordering love that is not. O’Donovan emphasizes that creation is not something that takes place within history as its first stage. Rather, it is the act of God that is the condition for the passage of history. This order is necessary for history to be told as history rather than as a bare account of the unfolding of matter and energy, forces and events, merely disposed thus and so. “We must understand ‘creation’ not merely as the raw material out of which the world as we know it is composed, but as the order and coherence in which it is composed.”[22]
It is on this basis that we are able to speak of the goodness of creation and evaluate the goodness (or lack thereof) of actions within it. Any ethical question will depend on our understanding of what properly ordered love looks like within creation. There may be distortions within that order, but it is only on the presumption of an ordering love that distortions can be spoken of at all; the categorization of anything as “not the way it’s supposed to be” presupposes that there is such a thing as “the way it is supposed to be.”
The ordering love that grounds creation is given from outside ourselves—indeed, must be given from outside creation. As such, it is not subject to our influence or evaluation; rather, our own actions must respect the order given from outside. This is the first principle, then, in a theological account of bioethics.
When we consider chronic disease from within this framework, it is important to distinguish between the distortions and corruptions that can occur within a fallen creation due to human sin and the uncorrupted, undistorted, order that endures in spite of sin. As Karl Barth wrote in the third volume of his Church Dogmatics, “sin is not creative”[23]—which is to say, the result of sin cannot be that the order of creation has been changed in any way. On the contrary, it is that enduring order that governs how we respond to the effects of the Fall, including chronic diseases such as sickle cell.
The second principle governing a theological account of bioethics is a theological anthropology. For the Christian tradition, humanity is made in the image of God. The meaning and implications of this doctrine are too rich to treat in full,[24] but at least four may be enumerated here:
First, the teaching that humanity is made in the image of God has always been the basis for holding that every human is possessed of incalculable worth and dignity. This has not been held universally across humanity. The pagan societies that existed alongside Christianity (and before it, Judaism, which professes a similar anthropology) generally held that some humans were born to rule and some to serve; that some lives (slaves, women, children, foreigners, etc.) were worth far less than others.
The reason for this dignity has been explained differently by different Christian theologians across the tradition. Some have held that it is grounded in capacities given to humanity, such as rationality—but this raises the concern that if a human is less intelligent than others or loses their rationality due to, say, traumatic brain injury or simple aging, they could somehow be less human. For this reason, more recent theologians have tended to move away from capacity-driven bases for the dignity attached to the image of God. Others have noted that even those classical theologians who did point to rationality as the basis for human dignity observed that it is the rationality of human nature that merits dignity, and an individual lacking in intelligence still possesses that same nature, suffering a mere accidental deficiency that results from the Fall. Again, sin is not creative; the Fall cannot make a human anything other than what he or she is. Regardless, across the Christian tradition, dignity is universally possessed by all human beings.
The second aspect of a theological anthropology grounded in the imago Dei is the concept of vocation. As noted, there is no single understanding of what the image of God is across the entire Christian tradition. But we can observe that the biblical context of the creation of humanity in God’s image in Genesis 1:26–28 occurs in the context of a blessing given to humanity that consists of a calling or vocation:
Then God said, “Let us make man in our image, after our likeness. And let them have dominion over the fish of the sea and over the birds of the heavens and over the livestock and over all the earth and over every creeping thing that creeps on the earth.”
So God created man in his own image,
in the image of God he created him;
male and female he created them.
And God blessed them. And God said to them, “Be fruitful and multiply and fill the earth and subdue it, and have dominion over the fish of the sea and over the birds of the heavens and over every living thing that moves on the earth” (ESV).
Whatever the image of God is, it is clear that it is somehow related to this calling. And what is that? It is a vocation of responsible action—responsibility for the care of creation, and responsible to the Creator God who remains Lord over that creation. And it is a calling to relationship—from the outset, humanity is created for a unity within diversity that is essential to its vocation. In Genesis 1:26–28, it is the diversity of the sexes that is directly mentioned, but over the course of the New Testament it is made clear that ethnic diversity and diversity of gifts and talents are likewise essential to humanity’s vocation.
Here we come to the first of two aspects of the imago Dei that are specifically Christological. For Christians, humanity is made in the image of God, but Jesus is the image of God (Col 1:15, Heb 1:3), the one who reveals humanity to itself (Jesus is referred to as both a second Adam and, at the same time, the firstborn of all creation). In the doctrine of the incarnation, Christianity affirms the goodness of human nature as created: physical, embodied, limited, particular. For us and for our salvation, Christ was made fully human.
If the incarnation provides grounds for affirmation of the created order, the resurrection does the same definitively. “The work of the Creator who . . . brought into being an order of things in which humanity has a place, is affirmed once and for all by” the resurrection.[25]
Crucially, the resurrection means that God has not allowed sin or the effects of sin, including disease and death, to have the last word over creation. The resurrection means that “man’s rebellion has not succeeded in destroying the natural order to which he belongs.”[26] O’Donovan writes:
Precisely because it is a reversal of Adam’s decision to die, the resurrection of Christ is a new affirmation of God’s first decision that Adam should live. . . . It might have been possible, we could say, before Christ rose from the dead, for someone to wonder whether creation was a lost cause. If the creature constantly acted to uncreate itself, and with itself to uncreate the rest of creation, did this not mean that God’s handiwork was flawed beyond hope of repair? . . . Before God raised Jesus from the dead, the hope that we call “gnostic,” the hope for redemption from creation rather than hope for the redemption of creation, might have appeared to be the only possible hope. ‘But in fact Christ has been raised from the dead . . . ’ (1 Cor. 15:20). That fact rules out those other possibilities, for in the second Adam the first is rescued. The deviance of his will, its fateful leaning towards death, has not been allowed to uncreate what God created.[27]
The resurrection, then, gives us grounds from within a theological account of humanity and of bioethics to fully affirm human efforts to resist death and disease.
Finally, in Begotten or Made? O’Donovan points out that in identifying persons, we do not refer to any quantifiable measure or characteristic. We do not recognize persons by intelligence, creativity, or brain activity, but rather by love. When Jesus was asked what commandments must be kept in order to enter the kingdom of God, he pointed to the obligation to love God with heart, soul, strength, and mind, and secondly to the command to love one’s neighbor as oneself. “And who is my neighbor?” he was asked in return, to which he responded with a story of unexpected love expressed toward one who would naturally be the enemy.[28] A theological account of bioethics takes seriously the mandate to love every human being as one loves oneself.
We recognize that wellbeing in our own lives consists of more than physical health—this is a bare minimum. Wellbeing includes spiritual health: our relationship to God and our neighbor, and flourishing at the level of our character. It also includes strong relationships, robust communities, and the opportunity to flourish across generations in families, neighborhoods, communities of faith, and vocation. For this reason, a theological account of human dignity will not only seek to address bioethical questions at the level of the individual. Moreover, it will not treat bioethics as though it can be reduced to individual biology, for there is more to life and wellbeing than physical life.
How does a theological account of bioethics help us to respond to new CRISPR therapies addressing sickle cell disease? I will first ask how to think about the ethics of the CRISPR-based therapy itself. But, second, I will also point to issues left unaddressed by the new therapy.
Proponents of using germline editing as therapy point to diseases like sickle cell disease in support of their case. Precisely because somatic cell editing does not change the human germline, this therapy alleviates the suffering of the individual that undergoes the therapy only and does not improve the prospects for his or her descendants. An individual who undergoes this therapy continues to carry two copies of the genetic variant that results in the disease and will still pass one copy on to any descendants. In this case, many stakeholders find there to be a strong case for germline editing, precisely because sickle cell disease afflicts its sufferers not only with pain, organ damage, and a shorter expected lifespan, but also with severe anxiety surrounding having children, for fear of passing the condition on to another generation.
Because the existing CRISPR-based therapy is intended for therapeutic use in those suffering from sickle cell disease, and because it targets somatic cells only, and not the human germline, it does not raise many of the ethical issues associated with CRISPR when either enhancement or germline editing is in view. This new therapy, however, would raise at least two issues for any of the ethical theories mentioned in this essay, before we come to the specific concerns of a theological account. The first is safety. There continues to be a risk of safety concerns such as off-target edits with unknown consequences. The second is inequity. The therapy has a cost of $2 million per recipient, a price that will be prohibitive for many insurance carriers. Inequitable funding for research into therapies for sickle cell disease has long been a concern and has exacerbated the mistrust and alienation that many in the sickle cell disease community, predominantly of African descent, feel toward the healthcare system. If the therapy is now not made widely available, this distrust will only be reaffirmed.[29]
From a theological perspective, CRISPR-based therapy to address sickle cell disease raises issues that go beyond the impact of such therapies on the human body. Begin with the notions of the ordered love that undergirds creation and the dignity that every human being is due by virtue of bearing the image of God. To be sure, any therapeutic advance that alleviates physical pain and the mental anguish connected with childbearing is to be welcomed. But the wounds that have been imposed on the community of those who suffer from sickle cell disease and their loved ones go beyond the physical. They are interpersonal, societal, and spiritual. They include the scars of the experience of having pain dismissed, disbelieved, and minimized by a healthcare system purportedly intended to care for those suffering disease. They include also the discouragement and disillusionment of watching research funding systematically steered away from sickle cell disease, seemingly precisely because so many of its sufferers are cut off from wealth and resources. These wounds are an affront to the love of God that orders creation and, specifically, the dignity due to every person made in his image. The incarnation affirms the worth of every person in their particularity, giving us strong theological grounds to reject the mistreatment of patients on the basis of stereotypes and biases.
A new therapy is to be welcomed; we can expect it to do much good without raising significant ethical concerns. It should not, however, be seen as a panacea to address all of the damage done by sickle cell disease; in particular, it does not automatically undo historical injustices or mitigate their ongoing societal costs. Indeed, we should be mindful of the possibility that it could indirectly even do further damage at the societal and spiritual level. If the existence of a therapy to address sickle cell is assumed to be more widely available than it is for reasons of economics or inequity, it could create a new justification for society to absolve itself of the responsibility to love our neighbor, responding with care and compassion for the most vulnerable.
The fact that humanity is called to a vocation of subduing the earth, bringing order from chaos, has two implications. On the one hand, it encourages the development of therapies that mitigate or eradicate disease: there seems to be no reason not to see sickle cell disease as part of the chaos that humanity should be seeking to overcome. But it can be easy to forget that part of the dignity of every human being is the fact that each of them is called to that same vocation; this includes those who suffer from sickle cell disease as well as those who work to overcome it. This calls for the community of those who suffer from the disease to be included in every stage of the process by which decisions are made about funding, developing, testing, and commercializing therapies.
The value of a theological account of bioethics is the richness it provides to our understanding of what constitutes human flourishing. Unlike utilitarianism and deontological approaches, a theological account does not seek to carry out a cost-benefit analysis at the level of the individual. It also assesses the ethics of a given policy on the basis of more than its impact on physical wellbeing. Instead, it asks how care for those suffering from chronic disease such as sickle cell can recognize in them the image of God, with all its implications for the relational nature of what it means to be human and the vocation to which every human being is called. It seeks to attend to the character of those who suffer from sickle cell, who are not only patients but meant to be agents of truth, courage, wisdom, and justice. It asks not only how the resources of the healthcare establishment can more justly serve those suffering from sickle cell (an important question), but also how the resources of those with sickle cell and their communities are essential to serve the wider community of human beings in which they live.
On this account, then, CRISPR-based therapies to address sickle cell disease are cautiously to be welcomed, but without assuming that they rectify all of the damage that sickle cell has caused to those who suffer from it and their communities.
[1] “Casgevy,” U.S. Food and Drug Administration, accessed August 23, 2024, https://www.fda.gov/vaccines-blood-biologics/casgevy.
[2] Anita Persaud et al., “A CRISPR Focus on Attitudes and Beliefs toward Somatic Genome Editing from Stakeholders within the Sickle Cell Disease Community,” Genetics in Medicine 21, no. 8 (2019): 1726–34, https://doi.org/10.1038/s41436-018-0409-6.
[3] “Data and Statistics on Sickle Cell Disease,” U.S. Centers for Disease Control and Prevention, May 15, 2024, https://www.cdc.gov/sickle-cell/data/index.html.
[4] Frédéric B. Piel, Martin H. Steinberg, and David C Rees, “Sickle Cell Disease,” New England Journal of Medicine 376, no. 16 (2017): 1561–73, https://doi.org/10.1056/nejmra1510865; Gregory J. Kato et al., “Sickle Cell Disease,” Nature Review Disease Primers 4, no. 18010 (2018): https://doi.org/10.1038/nrdp.2018.10
[5] U.S. CDC, “Data and Statistics on Sickle Cell Disease”; Piel et al., “Sickle Cell Disease, 1561–73; Kato et al., “Sickle Cell Disease.”; Sohpie Lanzkron, C. Patrick Carroll, and Carlton Haywood, Jr., “Mortality Rates and Age at Death from Sickle Cell Disease: U.S., 1979–2005,” Public Health Reports 128, no. 2 (2013): 110–16, https://doi.org/10.1177/003335491312800206.
[6] Piel et al., “Sickle Cell Disease, 1561–73; Kato et al., “Sickle Cell Disease.”
[7] U.S. CDC, “Data and Statistics on Sickle Cell Disease.”
[8] Obi Peter Adigwe, Solomon Oloche Onoja, and Godspower Onavbavba, “A Critical Review of Sickle Cell Disease Burden and Challenges in Sub-Saharan Africa,” Journal of Blood Medicine 14 (2023): 368, https://doi.org/10.2147%2FJBM.S406196.
[9] “The Untreated Syphilis Study at Tuskegee Timeline,” U.S. CDC, September 4, 2024, https://www.cdc.gov/tuskegee/about/timeline.html?CDC_AAref_Val=https://www.cdc.gov/tuskegee/timeline.htm.
[10] “Eugenics and Reproductive Coercion in Puerto Rico,” Center for Latin American & Caribbean Studies, University of Wisconsin Milwaukee, April 28, 2022, https://uwm.edu/clacs/eugenics-and-reproductive-coercion-in-puerto-rico/.
[11] Carlton Haywood, Jr., “Disrespectful Care in the Treatment of Sickle Cell Disease Requires More Than Ethics Consultation,” American Journal of Bioethics 13, no. 4 (2013): 12, https://doi.org/10.1080%2F15265161.2013.768857.
[12] Haywood, “Disrespectful Care in the Treatment of Sickle Cell Disease,” 12–13.
[13] Haywood, “Disrespectful Care in the Treatment of Sickle Cell Disease,” 13.
[14] A 2020 study found significant disparities between funding for sickle cell research and research into cystic fibrosis, associated with decreased research productivity and rates of novel drug development for sickle cell. The same study summarizes past evidence on factors that may contribute to such disparities. This evidence does not establish a definitive causal explanation for underfunding of sickle cell, but is consistent with hypotheses including “consideration of SCD as a black disease,” “stigma for people with SCD,” and the fact that the “recommended treatment for acute sickle cell pain involves medications associated with abuse, misuse, and addiction.” Faheem Farooq et al., “Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity,” JAMA Network Open 3, no. 3 (2020): e201737, https://doi.org/10.1001/jamanetworkopen.2020.1737.
[15] Marilyn S. Baffoe-Bonnie, “A Justice-Based Argument for Including Sickle Cell Disease in CRISPR/Cas9 Clinical Research,” Bioethics 33, no. 6 (2019): 661–68, https://doi.org/10.1111/bioe.12589.
[16] Rob Stein, “Sickle Cell Patient’s Journey Leads to Landmark Approval of Gene-Editing Treatment,” NPR, December 25, 2023, https://www.npr.org/sections/health-shots/2023/12/25/1219342935/sickle-cell-patients-journey-leads-to-landmark-approval-of-gene-editing-treatmen.
[17] Jimi Olaghere, “I Received the New Gene-Editing Drug for Sickle-Cell Disease. It Changed My Life.” MIT Technology Review, December 4, 2023, https://www.technologyreview.com/2023/12/04/1084209/vertex-exacel-approval-gene-editing-sickle-cell-disease-patient/.
[18] Samir K. Ballas, “Ethical Issues in the Management of Sickle Cell Pain,” American Journal of Hematology 68, no. 2 (2001): 128, https://doi.org/10.1002/ajh.1164.
[19] Ballas, “Ethical Issues in the Management of Sickle Cell Pain,” 128.
[20] Tom L. Beauchamp and James F. Chlldress, Principles of Biomedical Ethics, 7th ed. (Oxford: Oxford University Press, 2012).
[21] Oliver O’Donovan, Resurrection and Moral Order: An Outline for Evangelical Ethics, 2nd ed. (Grand Rapids, MI: Eerdmans, 1994); Oliver O’Donovan, Begotten or Made? 2nd ed. (Landrum, SC: Davenant Press, 2022).
[22] O’Donovan, Resurrection and Moral Order, 31.
[23] Karl Barth, Church Dogmatics III/2, trans. H. Knight, G.W. Bromiley, J.K.S. Reid, and R. H. Fuller (Peabody, MA: Hendrickson, 2010), 205. Hereafter CD III/2.
[24] For recent sources, see, for example, John F. Kilmer, Dignity and Destiny: Humanity in the Image of God (Grand Rapids, MI: Eerdmans, 2015); Richard Lints, Identity and Idolatry: The Image of God and its Inversion (Downers Grove, IL: IVP Academic, 2015); Marc Cortez, Resourcing Theological Anthropology: A Constructive Account of Humanity in the Light of Christ (Grand Rapids, MI: Zondervan, 2017).
[25] O’Donovan, Resurrection and Moral Order, 14.
[26] O’Donovan, Resurrection and Moral Order, 19.
[27] O’Donovan, Resurrection and Moral Order, 14. This is quite similar to the sentiments from Barth referenced above, where the fuller quotation reads, “The power of sin is great, but not illimitable. It can efface or devastate many things, but not the being of man as such. . . . Sin is not creative. It cannot replace the creature of God by a different reality. It cannot, therefore, annul the covenant . . . man can as little destroy or alter himself as create himself.” CD III/2, 205.
[28] O’Donovan, Begotten or Made? 72.
[29] “Ethical Considerations When Using Gene-Editing Treatment for Sickle Cell Disease,” Relias Media, Medical Ethics Advisor, June 1, 2023, https://www.reliasmedia.com/articles/ethical-considerations-when-using-gene-editing-treatment-for-sickle-cell-disease. I am grateful to an anonymous reviewer for pointing out that safety and cost are linked in this case, because one of the drivers of the high cost of the current therapy is the fact that the editing is performed ex vivo on cells harvested from the patient’s body, which can then be screened for off-target effects before being returned to the patient. In vivo gene editing would be less cost prohibitive but presents greater safety concerns. It is also the case that even the current technology is not guaranteed to be free from off-target effects. So Hyun Park and Gang Bao, “CRISPR/Cas9 Gene Editing for Curing Sickle Cell Disease,” Transfusion and Apheresis Science 60, no. 1 (2021): 103060, https://doi:10.1016/j.transci.2021.103060.
Nathan Barczi, "The Bioethics of CRISPR in the Treatment of Sickle Cell Disease: Ethical and theological Considerations,” Dignitas 31, no. 1–2 (2024): 8–13, www.cbhd.org/dignitas-articles/the-bioethics-of-crispr-in-the-treatment-of-sickle-cell-disease-ethical-and-theological-considerations.