By Robert Klitzman
Within the fifty years considering the fact that DNA used to be came across, we've seen outstanding advances. for instance, genetic checking out has swiftly enhanced the analysis and remedy of ailments akin to Huntington's, cystic fibrosis, breast melanoma, and Alzheimer's. yet with this new wisdom comes tricky judgements for numerous humans, who combat with worry approximately no matter if to get demonstrated, and if this is the case, 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 disorder, breast and ovarian melanoma, or Alpha-1 antitrypsin deficiency. The ebook describes--often within the person's personal words--how every one has wrestled with the monstrous implications that genetics has for his or her lives and their households. Klitzman indicates how those women and men fight to make feel in their challenge and its reasons. They confront a sequence of quandaries--whether to be confirmed; even if to reveal their genetic dangers to folks, siblings, spouses, offspring, neighbors, medical professionals, insurers, employers, and faculties; tips to view and comprehend themselves and their genetics; what remedies, if any, to pursue; even if to have youngsters, undertake, reveal 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 exams and chances, steer clear of fatalism, anxiousness, melancholy, and discrimination, and locate wish, which means, and a feeling of wholeness. compelled to wander via a desolate tract of moving sands, they chart paths that many others may possibly ultimately keep on with.
Klitzman captures right here the voices of pioneers, a number of the first to come across the non-public dilemmas brought through smooth genetics. Am I My Genes? is a useful account in their adventure, one who turns into all of the extra universal within the coming years.
"An impressive exploration...probing the various roles and implications of genetics in our lives today.... choked with incredible insights, this riveting ebook is essential analyzing for us all." -- Paula Zahn
"Klitzman lucidly discusses the ethical and mental complexities that are available the wake of genetic testing.... a huge e-book for an individual 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 means of these people at genetic risk." -- Thomas H. Murray, President and CEO, The Hastings middle Show
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Extra resources for Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing
A cousin died at 35 of emphysema. ” Known as a diagnosis only since 1963, Alpha was often missed. “My cousin’s father was possibly a carrier,”she continued. ” But she remained unsure of the exact reason. She and others were generally the first ones in their family to be diagnosed, and often faced vast uncertainties. 28 G E N E S I N T H E FA M I LY For breast cancer, too, risk may be perceived only indirectly, if at all. The quality of information, even when sought, can be poor, in part since families may not want to talk about a relative’s diagnosis.
But I wanted objective understanding of what was happening, so I wouldn’t be completely on my own, in the middle of the ocean, trying to figure out what’s going on with my brain. ” Karl also didn’t know to what degree to hold his father (vs. the disease) accountable for the abuse, exacerbating this desire for definitude. As described more fully below, for breast cancer, too, mutation-positive tests prompt individuals to monitor themselves for symptoms more vigilantly. For breast cancer, such a result was felt to be important to know even for patients who had already been diagnosed, since the likelihood of disease recurrence then increases.
Physical—not only mental—symptoms can also become part of a self-perpetuating cycle, as fears lead some individuals to exercise aggressively, to prove to themselves they are healthy, though such exercising could then cause injury. To support assumptions of being mutation-free, individuals desperately sought rationalizations—for example, that many others also displayed possible symptoms (such as anger) unrelated to the disease. But self-monitoring can, because of fear, take over and shape one’s very being.
Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing by Robert Klitzman