Genetic counseling is growing field

They help patients interpret genetic tests and markers, go over medical options

Kristin and Elijah Stevenson play with their sons Emmett, 14 months old, and Connor, 3 years old, at Oceanside Harbor Beach. The couple talked to a genetic counselor during their second pregnancy. CHARLIE NEUMAN • U-T,

Genetic counseling

Numbers: 2,789 in the United States

Annual salary: $84,000 average in California

Qualifications: Undergraduate degree in biology and master’s degree in genetic counseling

What they do: Counsel patients on genetic tests for inherited diseases and the risks of developing other conditions such as certain cancers and heart problems.

Regulation: Certification is offered by the American Board of Genetic Counseling; seven states require licensing and six, including California, are developing licensing programs.

Sources: National Society of Genetic Counselors and American Board of Genetic Counseling

Aron and Jennifer Oakes consult with genetic counselor Jason Chibuk, right, about their pregnancy. Jennifer is 13 weeks pregnant, and they have questions about hereditary traits. Peggy Peattie • U-T

Like many people who turn to genetic counselors, Kristin Stevenson was facing one of the most frightening moments of her life.

She was 22 weeks into her second pregnancy when a test of the fluid in her womb revealed that her unborn son had Down syndrome.

Stevenson’s doctor impassively ran through the difficult circumstances that would confront her and her husband as well as their afflicted baby for years to come. He held out the option of terminating the pregnancy, she said.

“We felt like we got a pretty negative presentation of everything,” she said. “That’s when they brought us to Jason, and he really pulled things together for us.”

Jason Chibuk is one of nearly 2,800 certified genetic counselors working in the United States. They help people decide whether to be tested for genetic markers tied to inherited conditions, disease risk and drug interactions, and they interpret the results.

The profession was thrust into an unwelcome national spotlight in July when a congressional subcommittee held a hearing on companies providing genetic testing services directly to consumers. Critics of the tests, which are different from those ordered through physicians, say they have little medical value and could be harmful if misinterpreted.

The testing companies, which include Pathway Genomics in San Diego, noted that they employ genetic counselors who are available by telephone to discuss test results with customers.

During the hearing, officials with the federal Government Accountability Office played taped conversations between investigators posing as customers and genetic testing representatives who offered questionable advice.

Some people listening to the recordings presumed the representatives were genetic counselors, but that wasn’t the case, said Elizabeth Kearney, a genetic counselor in Oakland who heads the National Society of Genetic Counselors.

“We confirmed (with the GAO) that the people in the recordings were customer service representatives,” she said.

Genetic counselors fill the gap left by doctors who often lack broad knowledge about the science of DNA and have little time in their schedules to vet the consequences of having a genetic risk of developing a devastating disorder.

“In every facet of my work, genetic counselors make my job easier,” said Dr. Mark Nunes, a clinical geneticist with Kaiser Permanente in San Diego. “I see them as interpreters of the arcane.”

A genetic counselor typically has an undergraduate degree in biology and a master’s degree from one of 29 postgraduate genetic counseling programs in the United States.

The American Board of Genetic Counseling offers certification for practitioners, and seven states require genetic counselors to be licensed. An additional six states, including California, are moving to set up licensing programs.


