By Robert Klitzman
Within the fifty years due to the fact that DNA used to be came upon, we've seen striking advances. for instance, genetic checking out has speedily enhanced the analysis and therapy of ailments similar to Huntington's, cystic fibrosis, breast melanoma, and Alzheimer's. yet with this new wisdom comes tough judgements for numerous humans, who strive against with worry approximately no matter if to get established, and if that is so, what to do with the implications. Am I My Genes? exhibits how actual members have faced those concerns of their day-by-day lives.
Robert L. Klitzman interviewed sixty four those who confronted Huntington's ailment, breast and ovarian melanoma, or Alpha-1 antitrypsin deficiency. The publication describes--often within the person's personal words--how each one has wrestled with the mammoth implications that genetics has for his or her lives and their households. Klitzman exhibits how those women and men fight to make feel in their obstacle and its reasons. They confront a sequence of quandaries--whether to be proven; no matter if to reveal their genetic dangers to folks, siblings, spouses, offspring, pals, medical professionals, insurers, employers, and faculties; the best way to view and comprehend themselves and their genetics; what remedies, if any, to pursue; no matter if to have teenagers, undertake, monitor embryos, or abort; and even if to take part in genetic groups. within the face of those uncertainties, they've got attempted to appreciate those checks and chances, steer clear of fatalism, anxiousness, melancholy, and discrimination, and locate wish, which means, and a feeling of wholeness. pressured to wander via a desolate tract of moving sands, they chart paths that many others could finally stick with.
Klitzman captures the following the voices of pioneers, the various first to come across the private dilemmas brought by way of sleek genetics. Am I My Genes? is a useful account in their event, one who becomes all of the extra universal within the coming years.
"An awesome exploration...probing the various roles and implications of genetics in our lives today.... choked with staggering insights, this riveting ebook is essential studying for us all." -- Paula Zahn
"Klitzman lucidly discusses the ethical and mental complexities that are available the wake of genetic testing.... an incredible e-book for someone who has the genes for pathology, that is we all, and that i suggest it highly." -- Kay Redfield Jamison, writer of An Unquiet brain
"An illuminating voyage in the course of the scientific, familial and existential quandaries confronted by way of these people at genetic risk." -- Thomas H. Murray, President and CEO, The Hastings heart Show
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Additional info for Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing
From the moment they learn they are at risk, these individuals all have to navigate through a difficult series of decisions—initially, whether to undergo testing or not. Moral dilemmas emerge of whether to obtain genetic information for the sake of one’s family, despite its potential costs to oneself. Since the HD mutation was identified in 1986, issues concerning genetic testing among at-risk individuals have been discussed, but many critical questions remain. , 5%–20%5,6), raising questions of how individuals at risk for these diseases in fact make these decisions.
Does that mean never leave the house? The test tells you the cancer genes are there. It doesn’t mean they’re going to be active. Why live with that fear in your life thinking: “I have cancer, I’m going to die”? 46 G E N E S I N T H E FA M I LY Those who already had breast cancer and then considered genetic testing may not pursue it because of fears that a positive result will depress them with the possibility of future recurrence. Karen, the lawyer with breast cancer who had not undergone testing, wasn’t sure if she “could deal with a positive result.
Other psychological characteristics, such as assertiveness, can motivate testing, too. Some think that people who are knowledge seekers should get tested. ” This description evokes theories concerning “monitors” versus “blunters” among people confronting medical information, but suggests that the desire for knowledge is part of larger desires and personality types. But how exactly individuals do or should define, gauge, and predict this trait, and know in advance if they possess it—especially with regard to genetic information—remains unclear.
Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing by Robert Klitzman