In the 11 years in which Brandt has explored the emotional and social effects of early screening for Huntington's disease, 183 people have been tested. Almost twice that many have dropped out or didn't show up

After an hourlong private session with Brandt, Jack admits, "I'm glad there's counseling involved. Some stories he told gave me some insight." But, given the turmoil in Jack's life, is this an appropriate time for him to undergo a potentially devastating test? "I see our job as ruling out only people who clearly have psychological disorders that make them vulnerable to the stress and put them at risk for catastrophic outcomes," Brandt answers. "Then my job is raising issues, helping people reason it through, rather than being the gatekeeper." It is Brandt's experience that people rarely make a major life overhaul as a result of the test. It now seems clear that Jack will proceed to dna analysis.

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 a home and a job, she was accepted for testing. When the news was bad, says Brandt, "she took it very well and thanked us for making her wait. She said, 'I couldn't have accepted it before as well as I can now.'" She is currently studying for the ministry.

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 tested; almost twice that number have not kept appointments or have dropped out. "That's their way of telling us they don't really want the test," says Brandt. "We think of that as a success."

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."

The 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 to their spouse); parents weather bad news better than childless adults (maybe the childless are newly disturbed by thoughts of never having a child).