DMEJ

Duke Medical Ethics Journal

The Impact of Rapid Advancements of Health Technology on Marginalized Populations

By: Mahi Patel

Shelley provided some of the most profound and timeless commentary on medical ethics through Frankenstein over 200 years ago. Since then, there has been a tremendous wave of revolutionary medical technology that has birthed countless new ethical dilemmas. One notable example is the development of respiratory therapy including ventilator support. When deployed, the ethics of this technology were hardly in the picture; respiratory therapy was seen solely as a way to improve the prognostics and quality of life of patients with acute and chronic pulmonary diseases. Just as with Frankenstein’s monster, the objective was undeniably met, but not without important issues and ethical questions arising from the process. The main consumers of respiratory therapy for acute conditions are the elderly, and often those who live in hospice or have their medical decisions largely made by family members

“If the wealthy are able to essentially purchase better genomes for their lineage, a new form of classism rooted in genetics would be formed.”

I. Historical Implications of Revolutionary Technology

Prometheus, playing God, defying natural law - Victor Frankenstein of Mary Shelley’s Frankenstein has been accused of it all. Through the story of an intensely driven scientist, Shelley created one of the first narratives that truly dives into the complex and high-stakes consequences of pushing the boundaries of scientific discovery and technology [1]. Frankenstein may have brought to life what was called a monster, but in the novel, Frankenstein’s creation is shown to gain corrupt intentions as a result of being neglected and mismanaged by its inventor. Although Frankenstein was, in his mind, devoutly working on technology that he believed could revive the dead and serve a noble purpose, readers can witness his lack of attention to the actual implications of his work and a concrete, ethical strategy for its deployment. The story may seem extreme, and even a relic of the gothic period, but as medical technology continues to be developed at a rapid rate, the themes explored in the novel have never been more relevant.

and/or caretakers. As there are many confounding factors that may contribute to a family’s decision to keep a patient on therapy, these patients are already often marginalized by their lack of choice. There are both ethical issues with keeping patients on life-supporting therapies when they may be harmed less by a dignified, natural death, as well as with the decision to remove patients with confusing or unclear prognoses from life-supporting treatment [2]. Although it is being more researched and physicians are better equipped to help inform families of the ethical implications of their decisions, respiratory therapies are a textbook example of revolutionary technology with unintended consequences.

II. Modern Technologies of Concern

Respiratory therapies are now considered a relatively older technology with well-researched implications and established models for their ethical management. More recently, however, the field of biotechnology is facing a massive boom as genetic engineering and gene therapies become more researched and commonplace. Science fiction has already explored some of the ethical misfalls of gene editing, as in Andrew Niccol’s 1997 film Gattaca. In this film, a genetically-inferior man faces significant and profound challenges when compared to his more genetically fit and, not surprisingly, wealthier counterpart.

The wealth disparity and its effect on access to healthcare is perhaps the most inflamed social inequity issue that results from the rapid advancement of medical technology. As seen through the story of a man severely disadvantaged by his lack of genetic editing to provide him with ideal qualities, those who cannot afford certain medical technologies are at risk of being pushed even farther toward the margins of society due to a socioeconomic inability to keep up with those who can afford such technologies. This issue compounds upon the unfortunate reality that financially disadvantaged populations are already predisposed to conditions such as diabetes, chronic pulmonary disease, and overall worse health and quality of life than those who can afford healthy lifestyles and the proper medical intervention.

Returning to the theme of responsible research in Frankenstein, it is important to recognize that genetic engineering technologies are not inherently evil and have the potential to significantly transform human health for the better [1]. Genetic editing has the ability to begin eliminating certain sex-linked genetic disorders from the population, such as Huntington’s, sickle cell anemia, and even color blindness. With further research and development, the cost of these therapies could be reduced to make them more feasible options for economically disadvantaged populations. The problem, however, arises with the “designer genes” aspect of genetic engineering. Once the technologies are in place, there is very little in the way of the monetization of delivering “designer genes”; that is, the engineering of the human genome to exhibit more “desirable” or “advantageous” traits that do not directly improve human health in a way that could have long-term, positive effects on the population [3]. If the wealthy are able to essentially purchase better genomes for their lineage, a new form of classism rooted in genetics would be formed. This form of classism would leave those who cannot make the extra expenditures on unnecessary genetic therapies even lower on the socioeconomic ladder.

III. Ethically Moving Forward

As exemplified by narratives such as Frankenstein and Gattaca as well as by revolutionary technologies such as respiratory therapies and genetic engineering, it is rarely the intention of medical advancements to do harm. Where things can go awry is when these technologies are rapidly deployed with limited planning on how to manage them in an ethical way, but as human society progresses, there has been an increased focus on bioethics and more ethically-responsible implementations of technology. This focus, however, is often at a very abstract and profound level, regarding questions such as “is this advancement a disruption to the natural order of life?” [1]. Although these questions have their fundamental utility, the medical field must be better equipped to handle the more practical impacts of medical technology on marginalized populations.

Several strategies can be employed to see this more proactive approach to ethical development come to light. One such strategy is creating a framework for the post-distribution stages of technology such as standard assessments for ethical risk [2]. At the core, these assessments would operate similarly to economic performance indicators, and eventually should become just as integral to the industry. Additionally, the aim of health technology should be to develop it in a way that is affordable and accessible for all. By decreasing costs, increasing utility, and integrating accessibility and ease of use into the design of products and technologies, we can mitigate the risks of new technologies for marginalized populations. Health technology has the ability to improve the quality of life and overall condition of all humans if properly deployed; as a society, we have the power to take the ethically-conscious actions necessary to realize this vision.

Review Editor: Joshua Sarafian
Design Editor: Olivia Fu

References

[1] Shafer, A. (2018). Why Frankenstein matters: Frontiers in science, technology, and medicine. Stanford Medicine Magazine, Ethics, Winter 2018. https://stanmed.stanford.edu/why-issues

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[2] Einav, S. & Ranzani, O. (2020). Focus on better care and ethics: Are medical ethics lagging behind the development of new medical technologies? Intensive Care Medicine, 46, 1611–1613. https://doi.org/10.1007/s00134-020-06112-4