
But for now, when a disease is nontreatable, the burden of
knowing can overwhelm the benefits. Nationwide, only 1,500
genetic counselors, most of them drawing on guidelines derived
from Brandt's research, have been trained to help people assess
such risks. "The protocol developed by Brandt is a paradigm for
other late-onset, incurable diseases," says Nancy Wexler,
president of the Hereditary Disease Foundation and a leading HD
researcher. "It's very responsive to individual needs."
This summer a 44-year-old Baltimore native named Jack was
waiting to have the first of at least three pre-test counseling
sessions, spaced over a two-month period. Jack had already
cleared the neurological exam that, if it had turned up HD
symptoms, would have made testing redundant. Though Jack is
healthy, he was well versed in the disease: his grandmother and
mother died from it, and he knows there is a fifty-fifty chance
that he has inherited the time-bomb gene. Two siblings have
tested negative, two others positive. One sister is battling
symptoms, including a depression that has landed her in a
psychiatric ward. "Until now," Jack says, "I haven't cared to
know my destiny because I didn't want it to change how I face my
day-to-day life."
But Jack's life has undergone some seismic shifts in the past 18
months. His marriage of 12 years collapsed, and he was fired
from a job in his wife's family's business, leaving him to
search for new career options. "It became evident to me that I
didn't have control over my life," he said a few days before the
counseling session. "This is one small piece where I can get
some control." Jack thought that a negative test result--one
that showed no abnormality in the gene IT-15 on chromosome
4--would inspire him to consider moving to another part of the
country. And if the news was bad? "Maybe I would be less of a
Type A and not work as hard," he said.
Jack had some firm ideas. If the news was good, he would not
tell his two siblings who tested positive. "I wouldn't tell them
that I'm lucky and reconfirm that they're unlucky," he said. He
was so certain that he neither wanted nor needed counseling that
he had not yet picked the "confidant" who the program stipulates
must accompany him to future sessions. "After what I've been
through the last 18 months," he said, "I can handle anything."
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