An old, brief reflection:
Germline gene editing currently poses considerable harms to social justice and equity. For justified use, our society needs to shift away from value-based judgements of disease. This issue is foremost to other considerations. Many other objections predicate arguments on hypothetical deleterious outcomes. These objections fail to consider the robust testing and data validation framework already in place, notwithstanding the rare instance of a bad actor. These are weaker arguments in part because they emphasize uncertainty and worst-case scenarios failing to conduct a thorough risk-benefit analysis. Conversely, the healthcare system and wider society currently face social inequity, inaccessibility of healthcare, and the sociocultural relationship between illness and disease. These issues raise concern over the use of germline gene editing technology for health and neuroenhancement. These goals are not inherently bad, but the costs of germline gene editing are not affordable for those who may need it most, considering the high rates of genetically-linked morbidities present in families of lower socioeconomic status (SES). Ignoring this fundamental issue perpetuates worse generational outcomes for low SES families. It posits that gene editing promotes genetic normativism since non-disease variant genes would be implicitly more desirable than mutated genes. These points are compelling, but not entirely persuasive. The core of this issue is the perception of illness begetting stigma surrounding a disease.
Christopher Boorse calls for a distinction between illness (socially evaluative view of a disorder) and disease (the biological malfunctioning of some system). It is unclear that germline gene editing fundamentally promotes genetic normativity, wherein it does not attempt to make a “more normal” person. As Boorse states, the normal is the objective proper functioning of a thing in accordance with its design, and therefore disease interferes with this, and medicine ought to fix it. However, in the view of illness, gene editing assigns higher value to some gene variants and devalues the experiences of those living with disease. Clearly this is a social issue rooted in evaluative judgements of one’s quality of life.
Germline gene editing could have considerable benefits. Take for instance single gene disorders like cystic fibrosis (CF), wherein changing a single letter in the genetic code could void dependence on healthcare, and provide mutation-carrying parents the ability to have a child free of CF. This change would save families and the healthcare system thousands on life-saving interventions for CF. Funds saved could be directed toward aiding those of lower SES who cannot afford often necessary treatments, especially in the private healthcare sector. For as long as society views disease through the lens of illness, the social injustice argument is persuasive. Benefits to germline gene editing do not clearly outweigh inequity, discrimination, and harassment against persons with genetic diseases that may result from a society where curing these diseases is an expensive choice. Such technology would need to be universally accessible regardless of the costs associated. Until societal views shift away from illness toward a non-judgemental/nonevaluative approach to disease, germline gene editing cannot successfully accomplish its premises without inciting considerable social harm.
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