The British Deaf Association has raised serious concerns regarding the exclusion of deaf individuals from gene-editing discourse. Their letter responds to a Guardian editorial on gene-edited humans, arguing that decisions about these technologies are being made without meaningful deaf community participation. Recent polling indicates UK public support for gene editing targeting life-threatening genetic conditions, yet no such consensus exists for non-life-threatening conditions like deafness.
In April, the US Food and Drug Administration approved a specific gene therapy for deafness, hailing their "swift" action following publication in the New England Journal of Medicine. However, critical medical and scientific discussions surrounding these therapies remain largely inaccessible in signed languages. This represents a significant democratic deficit, whereby crucial healthcare decisions proceed without adequate consultation of affected communities.
The letter invokes the familiar maxim "nothing about us without us" to underscore the necessity of inclusive policy-making. The authors implore UK policymakers to ensure deaf signers participate meaningfully in determining the future of gene-editing technologies. The risk that hereditary condition treatments will proceed without informed deaf community consent represents a fundamental violation of participatory healthcare ethics.
Sources: theguardian.com
The words in bold are from the article.
| 1. discourse | a. praising |
| 2. consensus | b. participation gap |
| 3. hailing | c. representative |
| 4. inaccessible | d. unavailable |
| 5. democratic deficit | e. agreement |
| 6. maxim | f. dialogue |
| 7. underscore | g. emphasize |
| 8. inclusive | h. basic |
| 9. implore | i. beseech |
| 10. fundamental | j. principle |
1.f 2.e 3.a 4.d 5.b 6.j 7.g 8.c 9.i 10.h