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The Story Within

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Title: The Story Within  

Author: Amy Boesky 

Publisher: John Hopkins University Press

Reviewer: Jane Brown, patient safety advisor, Worcester Acute NHS Trust

What was it like?

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, moving and extremely interesting.

What were the 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 & 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 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.

Who should read it?

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.


The Story Within

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