Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: WEDNESDAY, October 25, 1995 TAG: 9510250039
SECTION: NATIONAL/INTERNATIONAL PAGE: A-5 EDITION: METRO
SOURCE: The New York Times
DATELINE: LENGTH: Medium
Two months ago, Kathleen Clayton went to the University of Pennsylvania Medical Center to find out what to do about her alarmingly high cholesterol levels.
She found out something that alarmed her even more, and stumbled into an ethical and practical dilemma that is so troubling doctors and researchers that 50 of them gathered in Chicago at a closed meeting over the weekend to discuss the problem.
In Clayton's case, Dr. Daniel Rader, director of the lipid clinic at the medical center, had ordered a blood test that would reveal whether Clayton, a 51-year-old woman who lives in Perth Amboy, N.J., had inherited a particular susceptibility to heart attacks.
The test revealed that Clayton had two copies of a gene, called apo E4, which increases the risk of heart disease by 30 percent to 50 percent. While Rader was telling her this, she mentioned that she was having another problem - her memory was failing her.
She had forgotten recent events, she said, and one day she was reading her Bible and found herself unable to decipher words. Most frightening of all, she said, was when she was working on her checkbook and suddenly was unable to add or subtract.
Rader was shaken. Apo E4 is not just a heart disease risk factor. It also predicts risk of Alzheimer's disease, and people with two copies of the gene have a very high - perhaps as much as 90 percent - chance of developing the disease by the age of 80. But this is information not sought by doctors who are treating or researching heart disease. And it is information that nobody seems to know what to do with.
The gene predicts susceptibility, not certainty. And few doctors want to tell a patient that he or she has a 9 out of 10 chance of getting Alzheimer's disease but that there is nothing medical science can do about it. Rader's patient was already showing symptoms of Alzheimer's, so his decision was easier than most. ``It was spooky,'' Rader said. ``I had to tell her.''
Far more difficult situations are going to arise frequently in the near future, which is why the Alzheimer's Association and the National Institute on Aging sponsored the Chicago to decide what to do about the test.
The meeting concluded with researchers agreeing that the link between apo E4 and Alzheimer's ``is strong,'' but they did not recommend using the test to predict risk of the disease. They called for more research to determine the exact risks predicted by different apo E genes.
Dr. Norman Relkin, the organizer of the meeting, a neurologist at New York Hospital-Cornell Medical Center, said doctors who had used the test for other reasons were not obliged to inform their patients of its connection to risk of Alzheimer's disease.
Looming over the discussion is the lack of any way to prevent or effectively treat this devastating degenerative brain disorder, which afflicts 4 million Americans.
The uncontested value of apo E tests is in assessing the risk of heart disease. In that case, there is something that can be done: patients can take cholesterol-lowering drugs, for example.
Not only are tens of thousands of patients at lipid clinics being tested, but tens of thousands of people who participated in studies of heart disease have had the test. Most were never told the results.
Now, Alzheimer's specialists would like to study people who were tested for apo E as part of heart disease research. But how can they approach these people, and how can they tell them that they are now of interest to Alzheimer's researchers?
In an age when genetic tests are coming fast and furiously, the apo E dilemma stands out. ``We now realize that what appears to be on the surface a very straightforward blood test has very far-reaching implications,'' said Relkin, the New York neurologist.
by CNB