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Cargando... Carrier: Untangling the Danger in My DNApor Bonnie J Rough
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When Bonnie J. Rough receives the test results that confirm she is a carrier of the genetic condition hypohidrotic ectodermal dysplasia, or H.E.D., it propels her on a journey deep into her family's past in the American West. At first glance, H.E.D. seems only to be a superficial condition: a peculiar facial bone structure, sparse hair, few teeth, and an inability to sweat. But a closer look reveals the source of a lifetime of infections, breathing problems, and drug dependency for Bonnie's grandfather Earl, who suffered from the disorder. After a boyhood as a small-town oddity and an adulthood fraught with disaster, Earl died penniless and alone at the age of 49. Bonnie's mother was left with an inheritance that included not just the gene for H.E.D., but also the emotional pain that came from witnessing her father's misery. As Bonnie and her husband consider becoming parents themselves, their biological legacy haunts every decision. The availability of genetic testing gives them new choices to make, choices more excruciating than any previous generation could have imagined. Ultimately, Carrier is a story of a modern moral crisis, one that reveals the eternal tension between past and future. No se han encontrado descripciones de biblioteca. |
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Google Books — Cargando... GénerosSistema Decimal Melvil (DDC)362.198Social sciences Social problems and services; associations Social problems of & services to groups of people People with physical illnesses Services to people with specific conditions Gynecology and PediatricsClasificación de la Biblioteca del CongresoValoraciónPromedio:
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Two of my maternal uncles have a genetic disorder called Fragile X. Though not as medically devastating as HED, it still comes with it's own set of concerns and medical issues. My family has struggled with the idea of genetic testing for years and it has caused some frustrated conversations among my extended family. I have struggled, personally, much like Rough did, about whether or not genetic testing is for me. For me, it is not about the possibility of choosing not to have children, or even terminating a pregnancy; I simply want to have all my ducks in a row to be prepared for possibilities.
I admire Rough for sharing her story, especially about such an emotionally charged and personal topic. I applaud her for bravery. I'm not sure many people could be so open about sharing such a remarkable personal journey to motherhood. ( )