The Story Within: Personal Essays on Genetics and Identity

by Amy Boesky (Editor)

A thought-provoking collection of personal essays explores complex issues surrounding genetic 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 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. Contributors 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

Genres: Genetics, Nonfiction, Medical

280 pages, Paperback

First published October 10, 2013

About the author

Amy Boesky has written in a range of genres, from a picture book for children (Planet Was) to bestselling books for teenagers (Sweet Valley High,The Beacon Street Girls) to scholarship on 17th-century british literature. What We Have, her first work of creative nonfiction, is a candid account of her family's discovery that they carry the BRCA1 mutation, the so-called "breast cancer gene."

Reviews

[Priscilla Long · Rating 5 out of 5]

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.

[Marisa · Rating 5 out of 5]

As a prospective genetic counselor, I read this before my interviews. It was the perfect, well-rounded review of patients experience of getting genetic testing, growing up or raising someone with a genetic condition, or learning how to manage new information. There are also a variety of conditions and ages explored in the book, which is helpful for students who might only be familiar with cancer or prenatal genetic counseling. I have come back to this book to read specific chapters and kept notes and pedigrees on each chapter page.

[Blaize · Rating 3 out of 5]

While this book was not terrible, some of the stories seemed to ramble on. Some authors also chose to include basic genetics information that should be part of the reader’s knowledge before picking up the book.

[Jane · Rating 4 out of 5]

Description:

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.

Highlights:

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. I felt this was unsubstantiated as there are excellent hospitals that are committed to patients being cared for properly at the end of life.

Potential Readers:

As this book explores complex issues surrounding genetic identity this is applicable for all healthcare professionals who care for patients and the need for great understanding of genetics.

[Nancy Kennedy · Rating 3 out of 5]

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).

[Sven · Rating 4 out of 5]

As genetics becomes a growing field, understanding what encompasses a genetic identity will be an important aspect in living our lives.

This collection of essays from various authors describes what it's like to live in the fear and knowledge of having a genetic trait. The essays can really open up viewpoints you may have not considered before.

There are some pacing issues with the order of essays and seems to pick up near the end. This may seem deliberate since it starts at a slower pace. Just like the issue itself, some of the essays conflict with each other because the authors are not sure about what to do with their own identity.

[Donna Halloran · Rating 4 out of 5]

I am not one for short stories. I feel like as soon as I start to like someone the relationship is over. This was a different experience. I read this book for my Medicine and Literature book club. Each story felt complete and the series flowed beautifully. I learned a lot of new perspectives which I really enjoyed. I think someone who is struggling with a genetic disease (ex: a friend who's sister just found out she has the BRCA mutation) will find this book to provide a great insight into what they are going through.

[Chaya · Rating 3 out of 5]

As someone interested in both personal essays and genetic diagnoses, I was really excited when I first heard about this book. Though not all the essays were beautifully written, they all made me think and taught me important things as a future genetics healthcare provider. I particularly enjoyed the essays in the third section of the book. I think I'll re-read this periodically to refresh my perspective on the patients' experience of genetic diagnoses.

[Jane Somerville · Rating 3 out of 5]

Overall, it was very interesting and insightful. The essays varied in quality somewhat, which did limit it.