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The Story Within

, 280 pages
October 2013



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The Story Within

Personal Essays on Genetics and Identity

The contributors to The Story Within share powerful experiences of living with genetic disorders. Their stories illustrate the complexities involved in making decisions about genetic diseases: whether to be tested, who to tell, whether to have children, and whether and how to treat children medically, if treatment is available. More broadly, they consider how genetic information shapes the ways we see ourselves, the world, and our actions within it.

People affected by genetic disease respond to such choices in varied and personal ways. These writers reflect that breadth of response, yet they share the desire to challenge a restricted sense of what "health" is or whose life has value. They write hoping to expand conversations about genetics and identity—to deepen debate and generate questions. They or their families are affected by Huntington’s disease, Alzheimer’s disease, cancer, genetic deafness or blindness, schizophrenia, cystic fibrosis, Tay-Sachs, hypertrophic cardiomyopathy, fragile X, or Fanconi anemia. All of their stories remind us that genetic health is complicated, dynamic, and above all, deeply personal.


Misha Angrist, Amy Boesky, Kelly Cupo, Michael Downing, Clare Dunsford, Mara Faulkner, Christine Kehl O’Hagan, Charlie Pierce, Kate Preskenis, Emily Rapp, Jennifer Rosner, Joanna Rudnick, Anabel Stenzel (deceased), Isabel Stenzel Byrnes, Laurie Strongin, Patrick Tracey, Alice Wexler

Amy Boesky is an associate professor of English at Boston College and author of What We Have: A Memoir.

"A compelling collection of essays that address the experiences of many who have genetically based illnesses... These pieces can comfort those in similar situations; inform friends, relatives, and caregivers; enlighten health providers; and help us all better understand how others experience the world in which we live. VERDICT Recommended for those who are touched by genetic disorders or are interested in health in the modern world."

"If there were an All-Star Team for memoirists struggling with genetic misfortune... The Story Within would surely be it."

"This unique collection by a star cast of authors meditates on the complex relationship between identity and genetics. The essays are innovative literary engagements with the difficult philosophical and emotional issues raised by particular genetic inheritances. The authors cover a variety of genetic conditions, with varying levels and kinds of genetic risks and potential medical interventions, ranging from hereditary breast cancer to Huntington's disease and more."

"An important book... Amy Boesky's essay collection The Story Within exposes the ways we become self through our bodies and our kin. Studying genetic disorders that run in families illuminates an intimate aspect of identity. Choosing to read one's future in genetic code even when one is well is chilling as it is freeing. Boesky ushers in a new frontier of biological, autobiographical, and existential recognition, daring her readers to accompany her and her authors toward the light of knowing."

"Thought provoking, moving and extremely interesting."

"For those who have traveled a similar path and who have faced genetic illnesses, these stories can be a source of comfort. These stories can also help inform and educate and generate much needed dialogue about health and body norms. The narratives in The Story Within are a reminder that every life has value."

" The Story Within is a true success of a collection. With joy, rigor, and respect, it strvies to reconcile something like the original (one-of-a-kind) and the originator (universal), the literal (DNA) and the literary (collected essays). Original review below"

" The Story Within est un collectif réussi. Il s’efforce avec bonheur, rigueur et respect de concilier quelque chose comme l’orignal (singulier) et l’originaire (universel), le littéral (de l’ADN) et le littéraire (des textes réunis)."

"When medical students really feel that they understand genetics... let them read The Story Within and be brought down to earth with a bang. I know I was."

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