The advent of genome editing tools, particularly CRISPR, presents an unparalleled opportunity
to transform medical treatment and improve health outcomes. However, these advancements
raise ethical concerns about equitable access and the risk of worsening existing health disparities.
This essay will explore these issues through a consequentialist lens, focusing on how genetic
editing can enhance well-being while minimizing harm to marginalized populations.
Consequentialism is an ethical framework that evaluates actions based on their outcomes. Within
this framework, the goal is to maximize overall utility—defined as the balance of happiness and
well-being—while minimizing suffering. In the context of genetic editing, this approach
encourages us to assess how these technologies can benefit the greatest number of people while
also addressing the potential harms that may arise from unequal access. [1]
The fundamental tenet of utilitarianism is to achieve the greatest good for the greatest number.
This principle aligns well with public health objectives, where the goal is often to maximize
health outcomes for entire populations. Thus, when assessing genetic editing technologies, it is
crucial to consider their social implications, including accessibility.
One of the most compelling arguments for genetic editing is its potential to significantly reduce
the burden of genetic disorders. For instance, CRISPR has shown promise in treating conditions
like Sickle Cell Anemia and Cystic Fibrosis, potentially improving the quality of life for millions
affected by these ailments. Approximately 100,000 people in the U.S. are affected by Sickle Cell
Anemia, while around 30,000 individuals live with Cystic Fibrosis. The ability to modify genetic
sequences to prevent or correct these disorders could significantly reduce healthcare costs, with
annual expenses for managing Sickle Cell Anemia estimated at over $500 million and those for
Cystic Fibrosis reaching approximately $250,000 per patient per year [2]. By addressing these
issues through genetic editing, we could improve individual health outcomes.
From a consequentialist standpoint, the successful implementation of genetic editing
technologies could yield substantial public health benefits, leading to increased life expectancy
and enhanced well-being across diverse populations. The prospect of eradicating genetic diseases
represents not only a scientific breakthrough but also a moral imperative, as it offers a pathway
to improve overall utility for individuals and families [3].
However, realizing these benefits hinges on equitable access to genetic therapies. If only affluent
individuals or communities can afford these treatments, the overall societal benefit diminishes,
leading to wider health disparities. A consequentialist perspective would advocate for policies
and initiatives that ensure fair distribution of genetic editing technologies to prevent a "genetic
divide" that leaves vulnerable populations behind.
While the potential benefits of genetic editing are significant, the risk of exacerbating existing
health disparities poses a serious ethical challenge. If access to gene therapies is limited to
wealthier individuals, we may see a scenario where health outcomes improve for some while
deteriorating for others. This is particularly concerning in the context of chronic genetic
disorders that disproportionately affect low-income and marginalized communities. For example,
treatments like CRISPR-based therapies for sickle cell disease can cost millions per patient,
creating a scenario where only those with financial resources can benefit [4].
This disparity not only perpetuates existing inequities but also poses a moral dilemma regarding
the distribution of healthcare resources. A utilitarian framework would emphasize the need for
systemic changes to ensure equitable access to genetic therapies, such as government subsidies,
insurance reforms, and public health initiatives that specifically target underserved populations.
By addressing these inequities, society can work towards a model of healthcare that maximizes
overall well-being rather than privileging certain groups over others [3].
Another critical aspect of ethical use of genetic editing is ensuring informed consent, particularly
among marginalized communities. Ethical concerns arise when marginalized populations are
excluded from clinical trials, as this can perpetuate inequalities in access to new therapies.
Studies have shown that these communities often face barriers to participation in research,
including historical mistrust, language differences, and socioeconomic challenges [2].
A consequentialist perspective emphasizes the importance of maximizing overall benefits, often
focusing on research that impacts the largest number of people. However, this approach risks
overlooking marginalized communities, which can lead to inequities in healthcare. To truly
enhance overall well-being, it is crucial to include these populations in the research process.
Involving them fosters trust and transparency, potentially leading to broader acceptance of
medical innovations. Neglecting these groups not only fails to address their needs but can also
limit the effectiveness of healthcare advancements for society as a whole. Thus, developing
educational outreach programs that inform these communities about the risks and benefits of
participating in clinical trials is vital for ensuring that advancements benefit everyone, not just
the majority. [4].
Moreover, ethical oversight is necessary to prevent exploitation and ensure that clinical trials are
conducted with the utmost respect for participants’ rights and welfare. Ensuring that diverse
populations are represented in genetic research can help mitigate biases and enhance the overall
utility of the findings, thus benefiting a broader segment of society. This aligns with the
utilitarian goal of maximizing health outcomes by ensuring that new treatments are effective
across various demographics.
Regulation plays a pivotal role in balancing the benefits of genetic editing with the need for
ethical oversight. A utilitarian approach would focus on maximizing the overall health and well-
being of the population, advocating for regulatory frameworks that ensure the safety and efficacy
of genetic therapies while also considering the greatest good for the greatest number. However,
achieving this goal may require attention to equitable access, as marginalized communities often
experience disparities in healthcare. Policymakers should develop strategies that foster
innovation and accessibility, thereby enhancing the overall utility of genetic therapies across all
segments of society without compromising ethical standards [1].
This includes fostering collaborations between public and private sectors to develop pricing
models that reflect a commitment to health equity. Governments and healthcare organizations
should work together to create incentives for companies to lower the costs of genetic therapies,
making them accessible to all socioeconomic groups. Additionally, public funding initiatives
could support research aimed at developing affordable treatments for common genetic disorders
[4].
Another critical aspect of regulatory frameworks is the establishment of guidelines that ensure
fair representation in clinical trials. Policymakers should mandate the inclusion of diverse
populations in research studies, which would not only improve the scientific validity of the
findings but also enhance trust among underrepresented communities [3]. This holistic approach
to regulation aligns with utilitarian ethics by promoting the greatest overall benefit for society.
As we delve deeper into the implications of genome editing, it becomes evident that this
technology does not exist in a vacuum; rather, it intersects with broader societal concerns such as
health equity, ethical governance, and public trust in science. The potential for genome editing to
enhance human health and eliminate genetic disorders is promising, yet it raises questions about
accessibility and disparities. If advanced genomic therapies are available only to affluent
communities, existing healthcare inequalities may widen, leaving marginalized groups at a
disadvantage. This disparity not only threatens to exacerbate social injustices but also raises
ethical questions about the fairness of resource allocation in healthcare. Addressing these issues
requires a proactive approach that ensures equitable access to emerging technologies.
Moreover, the ethical dilemmas surrounding genome editing challenge our moral frameworks
and urge a re-examination of how we define the boundaries of human intervention. The concept
of consent becomes particularly complex when considering future generations who will inherit
edited genes without their explicit agreement. This uncertainty necessitates an inclusive dialogue
among scientists, ethicists, policymakers, and the public to navigate the implications of these
advancements. Additionally, fostering public trust in scientific research is crucial, especially in
an era of rapid technological change. Transparent communication and community engagement
will play essential roles in shaping policies that are not only scientifically sound but also socially
responsible, ensuring that the benefits of genome editing are equitably shared across all segments
of the population.
References
1. National Human Genome Research institute. (2017). What are the ethical concerns of genome
editing?. Genome.gov. https://www.genome.gov/about-genomics/policy-issues/Genome-
Editing/ethical-
concerns#:~:text=As%20with%20many%20new%20technologies%2C%20there%20is%20
concern,defined%20by%20the%20quality%20of%20their%20engineered%20genome.
2. Rothschild, J. (2020, May 29). Ethical considerations of gene editing and genetic selection.
Journal of general and family medicine.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7260159/
3. Subica, A. M. (2023, August). CRISPR in Public Health: The Health Equity Implications and
role of community in gene-editing research and applications. American journal of public
health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10323846/
4. Feliz, A. (2024). Navigating health equity amidst the gene editing revolution. Natural
Selections. https://selections.rockefeller.edu/navigating-health-equity-amidst-the-gene-
editing-revolution/