herenciageneticayenfermedad: BioEdge: Will curing the deaf lead to ‘cultural genocide’?

sábado, 11 de marzo de 2017

BioEdge: Will curing the deaf lead to ‘cultural genocide’?

Will curing the deaf lead to ‘cultural genocide’?

by Michael Cook | 11 Mar 2017 |

It is estimated that half of the world’s estimated 7,000 languages are in danger of disappearing. Under pressure from dominant languages to assimilate, linguistic communities shrink, wither and disappear. Every fortnight, the last fluent speaker of a language dies, according to some experts.

People who use sign language fear that this could happen to them. Some theorists of deafness argue that the Deaf are a distinct ethnic group, not a group of disabled individuals. So Deaf English speakers fear that the rapid progress of genetic editing could kill their community and their language as well.

Writing in the Impact Ethics blog, Teresa Blankmeyer Burke worries that gene therapy for hereditary deafness threatens the rich world of the Deaf and could even be described as cultural genocide.

The argument goes like this: the use of gene therapy to cure hereditary deafness would result in smaller numbers of deaf children. This, in turn, would reduce the critical mass of signing Deaf people needed for a flourishing community, ultimately resulting in the demise of the community.

Part of the problem is that the advantages of being a member of the Deaf community are far from obvious to the dominant culture which is not hearing-impaired. As she has pointed out:

What gets overlooked is the issue of human flourishing. What should be asked is whether the experience of being a full-fledged member of the signing Deaf community constitutes a kind of human flourishing that ought to continue to be a way of life for deaf people ...

Full access to a language ought to be a right for all persons possessing the capacity for language. But one can only have full access to a language if there is a thriving language community and this means ensuring the conditions that make this possible. If the people who use the language disappear, not by social attrition, but through biomedical campaigns predicated on the assumption that it is a harm to be deaf, so does this option for human flourishing.

A State Senator in Hawaii, Breene Harimoto gave an emotional address this week to persuade his colleagues to vote against a bill for legalising physician-assisted suicide for the terminally ill. He said that in 2015 he had been diagnosed with pancreatic cancer, which has a low survival rate and can be quite painful. But he was cured. “It is a miracle that I am still alive,” he said.

His point was that “terminal illness” is almost meaningless. Margaret Dore, a Seattle lawyer who lobbied against the bill, recalls an even more dramatic incident. “A few years ago, I was met at the airport by a man who at age 18 or 19 had been diagnosed with ALS (Lou Gehrig's disease) and given 3 to 5 years to live, at which time he would die by paralysis. His diagnosis had been confirmed by the Mayo Clinic. When he met me at the airport, he was 74 years old. The disease progression had stopped on its own."

If Senator Harimoto or Ms Dore’s friend had the option of assisted suicide, they might stopped fighting their disease and chosen a quick death. They would have chopped decades off their lives. “Terminal illness” is a pillar of assisted suicide legislation – and it just doesn’t make sense.