Word: brandts
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Dates: during 1990-1999
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Since the program began in 1986 at Johns Hopkins, only five people have been denied testing, with an invitation to return later. "We've been accused of being paternalistic," says Brandt, "but nothing compels my team to do the test. We have to be ethically responsible." One turned away: an unemployed woman, newly relocated to Baltimore, who had a history of self-destructive behavior, eating disorders and possible alcohol abuse. Told that her testing would be postponed, she became so distraught that Brandt feared she would smash a glass table in his office. A year later, after settling into...
Such time-elapse vignettes buttress Brandt's conviction that rigorous procedures are essential for effective testing. His program requires participants, who must be over age 18, to undergo a battery of psychological exams. During counseling it is stressed that the test is elective and the result confidential (a key concern for people who worry about health insurance). Misconceptions are dispelled: a positive result does not mean you are currently afflicted. And the strenuous post-test requirements--a visit every three months the first year and every six months the following two years--are made clear. To date, 183 have been...
...Brandt's painstaking preparation is showing promising results. Of the 63 participants who tested positive, only two have required psychiatric hospitalization, in both cases after the onset of symptoms. Still, not all the others who now show symptoms are having an easy time. A team social worker occasionally has had to bail a patient out of jail. "People make bad decisions," says Brandt, "especially in the early part of the disease...
...team had hoped to be able to predict accurately both how people would test and how they would cope on receiving the results. "So far," says Brandt, "it's been a bust." The only predictor of test results remains age; since HD typically hits between ages 30 and 50, the older the person, the higher the chance of a negative result. As for predicting people's reactions, most preliminary hypotheses have been replaced by new ones. Contrary to expectations, for instance, married people have a harder time coping with bad news than singles (perhaps they worry about becoming a burden...
...team's newest findings are among the most unexpected. Often people who seek out the test say they are trying to decide whether to have children. Yet there have been 10 births among the 63 who tested positive. "Part of it is life affirming," says Brandt. "They say having children gives a sense of normalcy to their lives." As for their children's health prospects, he says, "they're confident of a cure." The data also show 10 new marriages among those who found they have the gene. The spouse is often the person who served as confidant during...