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New Research in Visual Impairments and the Ethics Surrounding Treatment

As with any deviation of the body from “normal”, scientists strive to find innovative methods to treat and cure such “abnormalities”. We sometimes refer to them as disabilities, but many individuals, especially those with visual or auditory impairments, don’t actually consider their difference a disability. Yet at the rate science has been progressing recently, it seems as though researchers are increasingly gaining the ability to manipulate the human genome using the CRISPR/Cas system, and therefore open up to doors to millions of patients.

The CRISPR/Cas system is adapted from a bacterial immune system function that protects the organism from invading phage DNA of viruses. In a little over 20 years, scientists have moved from this initial finding to the ability to use CRISPR-Cas9 for genome editing, with the first human trials for cancer patients having begun this past summer in China.

Retinitis pigmentosa (RP) is a heritable genetic mutation that causes the retina to degrade, leading to blindness in ~1.5 million people worldwide. At Columbia University Medical Center and University of Iowa, researchers are now able to repair the genetic mutation in stem cells from patients’ tissues. This provides a personalized approach to treating a visual disability of genetic origin.

The application of CRISPR in visual disabilities at this point would be limited to divergences of genetic origin, so these therapies would not be of assistance for those who have lost vision due to injury. However, this treatment provides a new horizon for sensory deprivations. Yet the availability of such a treatment poses multiple ethical debates: what can be done to ensure that all individuals of all socio-economic status have access to such a treatment should they so choose it? Who should make the medical decision—should parents be allowed to decide for their children, or should children have the right to make this decision for themselves?

As science progresses, we must keep an open mind and heart, and redefine our definitions of normal. We all see the world with a different perspective and a different range of ability. Throughout the research process, it is always important to keep in mind the human beings who will undoubtably one day be affected, and consider all perspectives in every light of these discussions.

ArticlesLana Ruvolo Grasser