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The Story Within: Personal Essays on Genetics and Identity [Paperback]

Amy Boesky
4.0 out of 5 stars  See all reviews (2 customer reviews)
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Book Description

25 Sep 2013

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

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Product details

  • Paperback: 280 pages
  • Publisher: Johns Hopkins University Press; 1 edition (25 Sep 2013)
  • Language: English
  • ISBN-10: 1421410966
  • ISBN-13: 978-1421410968
  • Product Dimensions: 22.9 x 15.3 x 1.8 cm
  • Average Customer Review: 4.0 out of 5 stars  See all reviews (2 customer reviews)
  • Amazon Bestsellers Rank: 1,210,613 in Books (See Top 100 in Books)

More About the Author

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Product Description


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.

(Library Journal)

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

(Patrick Tracey PsychCentral)

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.

(Alexandra Stern, University of Michigan, author of Telling Genes: The Story of Genetic Counseling in America)

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.

(Rita Charon, M.D., Ph.D., Program in Narrative Medicine at Columbia University, author of Narrative Medicine: Honoring the Stories of Illness)

About the Author

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

Inside This Book (Learn More)
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Front Cover | Copyright | Table of Contents | Excerpt | Index
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Customer Reviews

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Most Helpful Customer Reviews
4.0 out of 5 stars interesting 14 Jun 2014
By brengaf
Format:Paperback|Verified Purchase
i am a carrier of the Cystic fibrosis Gene, i lost a son to the condition. so was very interested to read the chapter covering this Gene. but also gain a knowledge of many other hereditary conditions, i was unaware were Genetic.
found it a bit heavy going at times.
over all, glad i read it I now have a much better understanding of genetic illnesses.
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4.0 out of 5 stars GREATER UNDERSTANDING MOVING ACCOUNTS 10 April 2014
By brownie
Format:Kindle Edition

The author has compiled a group of essays about genetic disorders from around fifteen different contributors, all dealing with issues such as Alzheimer’s, cancer, deafness and schizophrenia as examples. It shows just how complex this is. It makes genetics more human.
I found this thought provoking, very moving and extremely interesting.


I found this extremely interesting to read from an individual prospective. "The Long Arm" by Clare Dunsford was fascinating in telling how Fragile X Syndrome affects not only the child or adult with it, but previous generations.
The authors have put a personal touch to this, rather than just a book about genetic disorders.
I grew up in a time when genetics was not talked about and people were labelled with their disorders and we grew up in fear rather than understanding. Since reading this book I have a better understanding and empathy.
It is thought provoking and testing for the reader to decide whether to have tests, to have children or to speak to members of their families.

Strengths and weaknesses:

The authors cover a variety of stories concerning genetic circumstances and theses are both moving and at times quite emotional for the reader. This is real life and complicated. It helps the reader to empathise and more importantly to understand.
I found that reading this from sixteen authors gave this a very varied approach to the subjects.
The notes section was extremely valuable as it listed each of the stories and gave valuable further information and references.
One aspect I felt was not a true reflection was concerning True Stories About How We Die, the view of hospitals not being as good as hospices.
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Most Helpful Customer Reviews on (beta) 4.6 out of 5 stars  30 reviews
3 of 3 people found the following review helpful
4.0 out of 5 stars Great topic, a bit hard to follow 24 Oct 2013
By Joel Holtz - Published on
Format:Paperback|Vine Customer Review of Free Product (What's this?)
Amy Boesky has put together an excellent group of essays about genetic disorders from 15 different contributors, all dealing with issues such as alzheimer's, cancer, deafness, schizophrenia and more.

The book is a bit hard to follow, but the decisions involved with genetic disorders are complex, so in that regard it's good for the reader to think about them.. to get tested or not, who to tell, whether to have kids, etc.

Patrick Tracey's essay, "WHY WOULD YOU BE WANTIN' TO KNOW?" Not talking about schizophrenia in Ireland is maybe the best in the book.

A good and worthwhile read for anyone wanting to think more deeply on genetics and how we as a society deal with it's varying effects.
2 of 2 people found the following review helpful
3.0 out of 5 stars Good read, but for a narrow audience 4 Jan 2014
By N. B. Kennedy - Published on
Format:Paperback|Vine Customer Review of Free Product (What's this?)
There's nothing I enjoy more than a first-person essay, so I was looking forward to reading this book. This book contains sixteen essays from contributors whose lives have been touched by the specter of genetic disorders. Some writers tell of suffering from disease or watching family members suffer, while others speak of the possibility of disease looming and what that means for their state of mind and the decisions they make.

Unfortunately, for the most part I found the essays an unsuccessful mix of story and study. It's the personal narrative that interests me most, and in most of the essays it is overshadowed by lengthy discussions of a more scholarly nature. Only a few essays held my interest ( "Why Would You Be Wanting to Know" Not Talking about Schizophrenia in Ireland; String Theory, or How One Family Listens through Deafness; What If), and I think it's because in these essays, the elements of story and study were well balanced. A person for whom genetic disease is a more personal and urgent matter would appreciate the scientific side of these essays more than I did.

As examples of collections of essays having a connection to health matters that I did enjoy, I would recommend two anthologies edited by Lee Gutkind, Becoming a Doctor: From Student to Specialist, Doctor-Writers Share Their Experiences and I Wasn't Strong Like This When I Started Out: True Stories of Becoming a Nurse. His earlier anthology, At the End of Life: True Stories About How We Die, is also worth reading, although I found the stories in that book somewhat one-note (hospitals bad, hospice good).
1 of 1 people found the following review helpful
4.0 out of 5 stars Where Science and Morality Meet 31 Jan 2014
By Antigone Walsh - Published on
Format:Paperback|Vine Customer Review of Free Product (What's this?)
This is an uneven but interesting collection of essays by people affected by genetic disorders. I found it thought-provoking and challenging. With the advances in genetic screening, science is merging with morality in ways never anticipated. For instance do you, as the woman may very likely possess the cancer gene, amputate presumably healthy tissue without getting tested? If you get tested, how do the results impact your life and choices and why? A range of disorders are discussed, including schizophrenia, cystic fibrosis, cancer, deafness and blindness As there are sixteen different authors, the essays are not equally successful. Yet each puts a human face on science. Recommended
1 of 1 people found the following review helpful
4.0 out of 5 stars The personal side of genetic disease and identity 6 Dec 2013
By Suzanne Amara - Published on
Format:Paperback|Vine Customer Review of Free Product (What's this?)
I have always been fascinated with genetics and genetic disease, more so even lately, as it starts to become possible for us regular people to actually find out about our own genomes. A family member's recent discovery cast a surprising light on my grandmother's heritage, which she never knew, as she was adopted, and I am struggling, as are other family members, with diseases with genetic components. So I was very eager to read this book of personal essays about genetics.

For the most part, I was not disappointed. There were some stand-out essays here. I was especially struck by "Help Wanted" by Michael Downing, which put into stark light how finding the gene for a disorder is not the end of the story in terms of getting help. I also found "The Long Arm" by Clare Dunsford especially well done, in telling how Fragile X Syndrome affects not only the child or adult with it, but generations going backwards.

Because these are essays written by different people, there is some unevenness. I found myself a bit annoyed by a few of the authors, when they seemed more interested in being literary than in talking about genetics. I also wished the first section, about finding out about your genes, featured someone who had actually made the choice TO find out, and not just those who didn't.

I think the next 10 or 20 years will be filled with stories like these---individuals and families dealing with the knowledge of what their genes have dealt them, and this collection is a great start toward putting all these stories into a personal light.
1 of 1 people found the following review helpful
5.0 out of 5 stars Powerful and Moving 3 Nov 2013
By Priscilla Long - Published on
This collection of personal essays puts a human face on genetics discourse on disease-causing mutations, a discourse that tends to become dryly statistical and abstract except to those fated to actually carry a genetic inheritance for cystic fibrosis, blindness, breast cancer, or something else. The stories are personal, heart-wrenching, and inspiring as they reveal lives, struggles, family cultures, and courageous decisions made by each writer. The different voices and different lives are a great strength of this anthology, which is altogether powerful and moving. Highly recommended.
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