DEMAND GROWS FOR COUNSELORS GENETIC KNOWLEDGE REQUIRES EXPLANATIONS.

Byline: Robert Monroe Staff Writer

PANORAMA CITY - The 34-year-old pregnant woman in the office of genetic counselor Sibylle Caldwell agonizes over her unborn child.

Brenda Sweet's age means her chances of giving birth to a child with Down syndrome, a condition causing severe developmental disabilities, are double what a 20-year-old faces.

``It's a human life, and on the other hand, it's a big responsibility,'' said Sweet, talking as much to herself as to Caldwell.

It's an agony Caldwell walks people through on a daily basis at Kaiser Permanente Foundation Hospital, Panorama City. Huge advances in genetic research, punctuated by announced completion of the human genome in June, mean such encounters could become daily events.

In an era of genetic knowledge that some fear will lead to eugenics, Caldwell's office is among the first places where promise and reality converge.

Genetic counselors explain genetic diseases to people who either might have them or have already been diagnosed as having them. Two decades ago, most of their clients wanted prenatal counseling in the years just after amniocentesis, analysis of amniotic fluid, was developed.

Now most receiving counseling are asking to be tested and advised about adult diseases detectable through blood samples, such as breast cancer or the progressive neurological condition Huntington's disease.

The profession has grown from a novelty to a luxury of larger hospitals. Genetic counselors are likely to become necessities at hospitals everywhere as understanding of the blueprint for human life reveals new genetically based diseases.

Caldwell and colleague Jodi Kirsch now counsel patients on 750 diseases with a genetic basis. By 2010, thanks to the genome project, scientists expect to identify and develop tests for 4,500 genetic diseases that are responsible for everything from retardation to heart disease.

``It'll be a lot more of the same,'' said Kirsch, a California State University, Northridge, graduate with an office a few doors from Caldwell's. ``Whereas right now, we can say yeah that (disease) is probably genetically related, in a few years, we'll be able to say, yeah we can test for that.''

In anticipation, colleges such as CSUN have developed master's programs in the relatively new field but are just barely keeping up with need, which is increasing as fast as the job description is widening.

In June, CSUN became one of 26 schools in the United States and Canada with an accredited genetic counseling master's program. All 26 together mint about 150 genetic counselors a year to add to a community of 1,400.

``It used to be that when graduates finished training, there would be a handful of jobs,'' said Melanie Salvador, a 25-year-old CSUN master's degree candidate. ``Now there's a lot of openings around the nation. Doctors are catching onto the necessity of genetic counselors, which I'm happy about.''

The job paid an average of $48,000 in California in 1998, the most recent survey year, according to the National Society of Genetic Counselors.

Salvador chose genetic counseling after seeing a job posting at the genetic testing company for which she worked as a technician. She saw it as a chance to use her degrees in biology and psychology. Training in psychology often proves more crucial than knowledge of biology, Caldwell and Kirsch find.

Sweet had an easy enough decision at an early point in her pregnancy. She simply chose to take a test that detects Down syndrome.

Some might choose abortions - legal in California until the 24th week of pregnancy - if a test shows genetic mutations in the fetus. Other women might choose to become pregnant only with selected eggs or not have children at all because of their own test results.

Some biologists and ethicists have branded decisions such as that a form of eugenics, reasoning that they are attempts to remove an undesired trait from humanity forever.

Caldwell and Kirsch said their function is clear: They do not give advice.

``It is definitely not our job to persuade them one way or the other, but it is our job to clarify their thinking,'' Caldwell said.

CAPTION(S):

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Photo:

(1) Wanting to learn all they can about her pregnancy, Brenda Sweet and her husband, John, watch a video while they wait for genetic counseling in a Panorama City hospital.

(2) Sibylle Caldwell counsels John and Brenda Sweet about genetic testing.

Charlotte Schmid-Maybach/Staff Photographer