Counsellors help families cope with DNA diseases

by Hilary Thomson
Staff writer

"Your baby has Down's syndrome."

Hearing these words parents need information, understanding and support. A UBC graduate in genetic counselling may be the one to help.

Almost unheard of 25 years ago, today medical genetics clinics are a part of every major hospital.

"There is an urgent need for this kind of knowledge," says Dessa Sadovnick, director of UBC's two-year master's program in genetic counselling. "The demand for genetic services has increased dramatically since the 1970s."

Almost half of all admissions to pediatric hospitals are due to a genetically transmitted disease. Illnesses such as cystic fibrosis, muscular dystrophy and diabetes all have a significant genetic component.

It's estimated that 60 per cent of Canadians will develop or die of a genetically-inherited disease. And as more people are diagnosed with a genetic illness, more resources are needed to help them.

Genetic counsellors bridge the gap between technology and families.

They offer support in a variety of situations: helping couples with family planning where there is a history of genetic disease, discussing ultrasound test results, or reviewing care and treatment plans for a child born with a genetic disease or abnormality.

UBC's program in genetic counselling started in 1996 with seven students. Another six were admitted this year. One of only two in Canada (the first was at McGill University), it's sponsored by the Dept. of Medical Genetics through the Faculty of Graduate Studies.

Acceptance to the program requires both counselling experience and familiarity with the workings of a clinical genetics unit. Although they come from varied backgrounds, most student applicants have a science degree and have studied biochemistry, genetics and basic statistics. In addition, they've volunteered at family planning clinics, crisis centres, special needs group homes, or in local medical genetics clinics.

Once accepted to the program, their studies include molecular genetics, human genetics, counselling techniques and bioethics.

Students are attracted to the program because they enjoy the excitement of genetics and want to interact with patients and families, says Anita Dircks, the program's co-ordinator, who also works as a genetic counsellor.

"My objective is to give people all the information they need to make the decision that is right for them," says graduate student Gurdip Hulait. "They're very anxious and need to know in lay terms exactly what the problem is, what we know about it and what their choices are."

Genetic counsellors usually work in a hospital affiliated with a university centre for medical genetics. There are currently clinics at the Children's & Women's Health Centre of British Columbia and at Victoria General Hospital. Both conduct outreach clinics in towns throughout B.C.

In addition to direct contact with families, counsellors conduct clinical research and offer educational programs to students, the public, and health care and social workers.

"The counsellors' knowledge base meets the needs of the family," says Dircks. "Although doctors provide technical and medical information, the counsellors can devote time to discussing the psycho-social aspects of hereditary illness."

Sadovnick, a professor in Medical Genetics, sees the counsellors as an integral part of the team providing genetic care. They can provide many answers about risk for family members, she says.

And it makes sense to have a genetic counselling program in Vancouver, Sadovnick says, because of the city's multicultural population. Some ethnic groups are particularly susceptible to certain genetic diseases.

"Our counsellors need to understand the variety of genetic disease and be sensitive to cultural differences in dealing with genetic issues," she says. "They can get that awareness here in Vancouver."

Although the need for genetic counselling is growing, the program's enrolment will be kept low until more is known about the future of jobs in health care, says Dircks.