Confronting Fate and Family Secrets in the Age of Genetic Testing
Oxford University Press, USA
March 2012
On Sale: March 1, 2012
376 pages ISBN: 0199837163 EAN: 9780199837168 Kindle: B007K3DIRM Hardcover / e-Book Add to Wish List
In the fifty years since DNA was discovered, we have seen
extraordinary advances. For example, genetic testing has
rapidly improved the diagnosis and treatment of diseases
such as Huntington's, cystic fibrosis, breast cancer, and
Alzheimer's. But with this new knowledge comes difficult
decisions for countless people, who wrestle with fear about
whether to get tested, and if so, what to do with the results.
Am I My Genes? shows how real individuals have confronted
these issues in their daily lives. Robert L. Klitzman
interviewed 64 people who faced Huntington's Disease, breast
and ovarian cancer, or Alpha-1 antitrypsin deficiency. The
book describes--often in the person's own words--how each
has wrestled with the vast implications that genetics has
for their lives and their families. Klitzman shows how these
men and women struggle to make sense of their predicament
and its causes. They confront a series of
quandaries--whether to be tested; whether to disclose their
genetic risks to parents, siblings, spouses, offspring,
friends, doctors, insurers, employers, and schools; how to
view and understand themselves and their genetics; what
treatments, if any, to pursue; whether to have children,
adopt, screen embryos, or abort; and whether to participate
in genetic communities. In the face of these uncertainties,
they have tried to understand these tests and probabilities,
avoid fatalism, anxiety, despair, and discrimination, and
find hope, meaning, and a sense of wholeness. Forced to
wander through a wilderness of shifting sands, they chart
paths that many others may eventually follow.
Klitzman captures here the voices of pioneers, some of the
first to encounter the personal dilemmas introduced by
modern genetics. Am I My Genes? is an invaluable account of
their experience, one that will become all the more common
in the coming years.