By Robert F. Weir, Susan C. Lawrence, Evan Fales
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Extra info for Genes and human self-knowledge: historical and philosophical reflections on modern genetics
15 These aspects of genetic information are well known to people who have a genetic disorder running through their family. Most individuals at risk for an autosomal dominant genetic disorder have firsthand knowledge of both the disease and its effects. Many at-risk individuals have had to contend with years of secrecy and denial on the part of family members who refuse to believe that there is anything wrong. People talk in whispers about their shame at having this "taint" in their family. In one small town, HD came to be known as Cooke's disease after the family who had many affected members.
But what is so private about genetic information is, at the same time, extremely communal. Genes are shared with ancestors, siblings, and children. In many cases, a person cannot even find out about his or her own genetic heritage without having information about numerous other family members. Genetic diseases are truly a family affair, with all the attendant problems of family interactions. The most elo- Page 7 quent description of this state of affairs came from a thirty-year-old woman, married, with two children, and at risk for HD.
This crushed him. This gentle, loving man had suddenly turned into a violent man, and then into a very depressed soul. When my sister and I were ten years old, my mother started slurping a lot and left the house a mess (she had been very particular in her housecleaning duties, and it was often said that you could eat off my mother's floor, even in the basement). She started spending a lot of time in the hospital. It took months, but she was finally diagnosed with HD. I was only ten, but these words meant something terrible as my poor dad said them.
Genes and human self-knowledge: historical and philosophical reflections on modern genetics by Robert F. Weir, Susan C. Lawrence, Evan Fales