Approximately 37 million people worldwide are blind, with about two million individuals becoming blind each year. Around seventy- five percent of the cases of blindness are able to be prevented or treated, with the number of those going blind increasing in developing countries like India (Subramaniam, 2006). In the final days of 2017, the Food and Drug Administration (FDA) approved Luxturna, an attempt to treat a specific type of inherited blindness created by pharmaceutical company Spark Therapeutics. The potentially risky treatment does not ensure a permanent solution to blindness, but rather boasts promises of partial or temporary relief (Zhang, 2017). While Luxturna seems to provide a cure, its one-million-dollar cost excludes individuals with the genetic conditions and financial burden from receiving the gene therapy treatment. Furthermore, the notion of “solving” or “curing” blindness itself gives way to a number of ethical dilemmas to be analyzed by bioethics and disability rights advocates. While the issues presented by Luxturna are difficult to navigate, the various groups raise important considerations for individuals and communities as a whole and the disability rights perspective presents more compelling evidence as to why solving blindness should not be further considered.
From a bioethical perspective, the notion of curing blindness is a positive and innovative one. Following the bioethical principle of autonomy and distributive justice as explained by Lewis Vaughn, curing blindness using Luxturna is a major advancement in the bioethics community (Vaughn, 2012). This conclusion is drawn particularly based on the principle of autonomy, which asserts that an individual should be able to “direct one’s life and choose for oneself” (Vaughn, 2012, p. 9). Therefore, if a cure to blindness is available, regardless of the cost, a person with Leber’s congenital amaurosis, the specific type of inherited blindness that Luxturna treats, should have the choice to have vision restored or permitted.
Aligned with the view of autonomy is the consideration of informed consent, ensuring that the patient understands and acknowledges the risks associated with the respective treatment (Vaughn, 2012). In this case, informed consent would take the form of notifying the patient of the risk associated with injecting the medication into eyeball, as well as potentially not receiving full vision, and other standard risks with procedures (Zhang, 2017). If the patient still seeks the treatment, they should be able to receive it.
Bioethicists would agree that the cure for blindness presented by the Luxturna therapy could be explained though the Rawls’ Contract Theory, specifically through distributive justice. This emphasizes that there is a social contact among a community, striving for a common advantage (Vaughn, 2012). Through distributive justice, individual’s medical treatment would be made more equal across the board. This includes the notion of equal rights and respect for all individuals (Harris, 1997). In the Luxturna example, this would mean a mutual agreement that curing the genetic form of blindness is the most advantageous for the population.
The disability rights perspective on the case of curing blindness with gene therapy is against the idea due to the belief that there is no normal and disabled groups, including the blind, should be destigmatized and be embraced for their disability. While the rights of disabled peoples have grown significantly over time, still there exists a negative stigma against those with a disability. One such stigma is that dependency on others is bad, which disability rights groups would counter with the notion that “it is what makes a community and a democracy” (Nielsen, 2012, p. xiii). Many with the opportunity to be treated by Luxturna chose not to be treated. Promotion for Luxturna depicting a blind individual taking their child to the park prompted the blind community to respond with insight that they could care for their children “just fine” (Zhang, 2017).
Zhang credits the Luxturna based treatment as a way to decrease the unemployment level of the the blind population, which is about seventy percent (Zhang, 2017). Despite this hopeful anecdote, the 1990 Americans with Disabilities Act (ADA) prohibits disability-based discrimination in employment settings, so Luxturna treatment would not greatly increase the likelihood of employment on a disability related basis. Furthermore, the Luxturna treatment assumes that blind individuals want their status to be changed, however, many blind people, especially those born blind, embrace their status (Zhang, 2017). In this way, tensions exist between the medical and blind community in India, where blind individuals are being cured of blindness through surgical means. While their blindness is curable, many in this community embrace their status and would prefer to remain blind than seek medical treatment (Subramaniam, 2006). Disabled individuals, including the blind, add richness and serve as a source of knowledge throughout culture (Nielsen, 2012, xiv). The assumption by the medical community that blind individuals want to be cured of an inherited disability disregards the choice of the patient, and implies that there exists a need for the disability to be cured.
Thoughts of the social versus medical models can be identified while evaluating this case. The social model, which claims that an individual with disabilities is not hindered by their impairment, but by their environment, would say that the blind individuals face difficulty by inconveniences to their day to day life. The medical model, which identifies disability as a consequence of a health condition or trauma, would say that blindness prevents individuals from doing many activities that able-bodied individuals can do (Griffen, 2016). For these reasons, the disability rights community would side with the social model and work to accommodate various disabilities, including blindness. Alternatively, medical community would be likely to follow the medical model and encourage treatment.
The use of Luxturna to cure blindness conjures up a bioethics and disability rights conversations about fixing disabilities. Is it right to change the way someone is based on the notion that disabilities are wrong or fixable? In her book, Beasts of Burden: Animal and Disability Liberation, Sunaura Taylor and philosopher Peter Singer debate whether each other would take a $2 pill that would cure for a given disability, if it were available and given the risks (Taylor, 2017, 134). This example serves as a miniscule and hypothetical version of the more extreme and real version with the use of Luxtruma to conduct gene therapy. Is what makes someone unique and individual worth curing if society doesn’t find it normal? The bioethical stance is that this medical achievement would help people with disabilities integrate more fully into society, allow the use of autonomy to choose treatment, and follow moral theory. Alternatively, disability rights views this as an attempt to cure disabled individuals and further the notion of a normal type of person, of which blind is not. After analyzing the two sides, the disability rights perspective seems more moral and fitting in the situation.