Devastating: In the Eye of the Beholder

Exploring some of the ethical issues around medical science, recent breakthroughs in genetic discovery, and the broader impacts on society.

Published July 1, 2000

By Allison C. de Cerreño
Academy Contributor

It seems that not a day goes by without hearing about some new advance in the area of genetics. Whether it is mapping a new chromosome or finding a new marker for disease, the pace of discovery is sometimes awe-inspiring.

Recently, I was reading an article in a well-known science magazine about the mapping of Chromosome 21. The gist of the article was that with the recent mapping of this chromosome, much more can now be learned about Down syndrome. This is exciting news indeed. However, one phrase in particular struck me—the use of “devastating disease” to describe Down syndrome. These two words have tremendous implications for how we move ahead in this age of genetics, what we choose to study, and how we perceive ourselves and those around us.

Having worked with Down syndrome children and other children and adults with various developmental delays and special needs, I immediately questioned: “devastating” to whom? To the child with Down syndrome, to the parents of that child, or to society? Along those same lines, who determines when something is “devastating”? And finally, who determines how we treat something, or whether we treat something, that others consider “devastating”?

Questions Left Unasked

Such questions have long been asked by groups working with adults and children with special needs. I am reminded, for example, of the debate regarding the use of cochlear implants to help certain hearing-impaired children experience sounds. But all too often the questions are left unasked by policymakers, or by the scientists making the discoveries.

The answers to these seemingly simple questions are not always clear-cut. What is devastating to one person may not be to another. What is perceived as devastating by one culture may not be seen the same by another.

However, it is important to make sure these questions are asked as we move forward making discoveries about our genetic makeup. Indeed, as more is learned and we are able to effect changes in people as a result, asking such questions will be critical. The way they are answered will prove even more so, for it will say much about how we perceive humanity.

Also read: Of Stereotypes and Scientists: STEM in Popular Media