“It is thus vitally important that the views of those who stand to be most affected by the development of gene editing technology, people with genetic conditions and disabilities, are documented and considered as policies and norms around these technologies are developed.”
For millennia, people with disabilities have had little to no input on important policies affecting our lives. Biomedical “cures” for disabilities are no different. There is remarkably little research on the views of disabled people toward medical treatments for disabilities. New gene-editing technologies may allow some disabilities, once thought of as inevitable and permanent, to be reversed in individuals or prevented in their children. Some of the ethical controversies around gene editing are well-known, but we hear little about what disabled people think of them.
Lily Hoffman Andrews and her colleagues sought to correct this gap by interviewing 17 adults with genetic blindness. In their study, they asked adults with either Retinitis Pigmentosa (RP) or Leber Congenital Amaurosis (LCA) how they felt about the prospect of either having their blindness reversed through gene editing, or using “germ-line” gene editing to prevent blindness in unborn children. They also asked the participants what they thought about gene-editing in general. The researchers purposely selected a sample of adults who differed in age, race/ethnicity, and how old they were when they first became blind.
The researchers found that the participants generally saw some benefits in gene-editing technologies. However, opinions about gene-editing for blindness were diverse. Unsurprisingly, there was an inverse relationship between attitudes toward blindness and attitudes toward gene-editing to escape blindness. That is, the participants who described their blindness as neutral or positive were less interested in pursuing gene editing than the participants who described blindness as an inconvenience or a medical problem. Some of the participants emphasized blindness as a positive part of who they are. For these participants, the thought of eliminating blindness, either for themselves or in the gene pool, was not desirable. There was also a trend for the participants who became blind later in life to show more interest in gene-editing than the participants who had been blind since birth or infancy. Overall, the participants’ attitudes toward gene-editing for themselves were similar to their attitudes toward gene-editing to prevent blindness in unborn children, although two of the participants showed more interest in the latter than the former, wanting the possibility of a better life for their kids.
The participants also identified a number of issues with the wider use of gene-editing technology. They emphasized the importance of informed consent and choice to accept or decline a treatment. They described the complexities of having parents make these decisions for their unborn or very young children. Another concern revolved around the high cost of treatment and the possible negative outcomes for those who either cannot afford treatment or who wish not to pursue it. For example, it was stated that disability benefits and accommodations should not be denied to those who either cannot or will not pursue treatment. Finally, some participants mentioned the language that is often used to hype up gene-editing treatments. Too often, news articles about gene therapies focus on the devastation of blindness and the miraculous benefits of treatment for those who receive it. This rhetoric grabs attention, pulls heart-strings, and can help raise money for the treatments or “sell” them to potential consumers. Yet it also fortifies existing stereotypes about blindness, further devaluing the lives of those who are not treated, and it may give false hope to people who might not respond well to treatment or who might gain only a small amount of sight.
There is no solid consensus on gene-editing technology, even in a small sample of people with the same medical condition (e.g., there were differences of opinion between participants with RP and between participants with LCA). I must note that this sample was a convenience sample and included adults who were all highly educated and all part of a blindness advocacy organization. There is likely much more support for genetic treatment in the wider blind community, especially among those who are newly blind. Yet this study suggests that if even a few people have reservations about gene-editing for themselves or their children, such reservations need to be heard and incorporated into policy. At the very least, this tells us that some people are going to decline treatment, even if the treatment is highly effective, safe, affordable and widely available.
From the authors: “It is important to discuss and promote gene editing technology in a way that is not derogatory toward blind people and their capabilities, and is conscious of the fact that many individuals may consider their blindness to be an important and valuable part of who they are. Freedom of choice and informed consent––including accurate, unbiased information about the lives of blind people for sighted parents considering gene editing for their children––are vital. And societal investment in accessibility and inclusion must not be impacted by the prospect of a ‘cure’ or treatment for certain forms of blindness, nor should access to resources be impacted by an individual’s choice to utilize or not utilize gene editing. The voices of those affected by genetic conditions and disabilities must be included, and prioritized, in societal decision‐making about gene editing.”