Costly genetic tests for cancer worry specialists

Medical specialists and officials are concerned by overseas companies offering expensive genetic tests to people worried by cancer in their family.

They say the tests can cost several thousand dollars and may not come with adequate family counselling.

The Ministry of Health says a number of cancer and genetics specialists have raised concerns about companies advertising genetic tests for cancer susceptibility.

In a newsletter to general practitioners, the College of GPs has passed on the ministry's concerns about the "significant technical, social, ethical, safety and costs issues associated with genetic susceptibility testing".

"Practitioners should ensure that they are aware of these issues, or seek specialist advice, before referring patients for any genetic tests," the ministry says in the newsletter.

But Australian company Genetic Technologies, which sent brochures to New Zealand oncologists and some GPs outlining the risks alongside pictures of families, says no one is tested without appropriate counselling. It believes the public sector simply does not want to give up its "stranglehold" on genetic testing.

Genetic testing for cancer risk is available free through the public health system.

Most people wait three to four months to see a geneticist and those judged to need testing wait a further several months for results, depending on the type of test.

Clinical geneticist Dr Alexa Kidd said testing for gene mutations was about much more than the disease risk of the individual patient. The results could affect other family members, influencing their employment and their access to or the prices they paid for health and life insurance.

In cancer testing, the state-run services took a detailed family history, confirmed it through cancer registries and other means, calculated the likelihood of a specific cancer-causing gene being involved and only then might progress to offering testing.

Dr Kidd, based at the Capital and Coast District Health Board, which provides genetic testing for the South Island and lower North Island, said if a mutation was found then other at-risk family members would be offered testing for the same gene fault after counselling about the implications.

"My concern about private testing for familial cancers is that most of these steps would not be taken and the testing would not start with an affected individual.

"It is likely to be very expensive and a negative result may give false reassurance."

Only 5 per cent of cancer was due to gene mutations. Testing was not offered unless there was a "strong-ish" family history or the cancer was unusual and developed at an early age.

She said GPs and many specialists could not be expected to offer the family counselling needed with genetic testing.

College of GPs president Dr Jim Vause agreed with the concerns raised by the ministry. Aside from the ethical issues, genetic testing was a specialist area and most GPs did not have the level of knowledge needed to provide patients with meaningful information.

But Dr Deon Venter, director and chief pathologist for Genetic Technologies, said the company offered people a choice - not everyone who wanted a test was able to get it through the public system. It was also able to offer a faster service. The average wait for a breast cancer test result was 3 to 4 months compared to anecdotal reports of 9 to 12 months in the public sector.

Among the tests offered by Genetic Technologies were tests for three of the most common cancers in Australasia - breast, bowel and melanoma. The costs ranged from about $730 for a bowel cancer test to $2500 for breast cancer.

Dr Venter said the brochure sent to New Zealand doctors advised people they must see their doctor before any tests were done - "we don't sell direct to the public" - and they must have had counselling.

Gene tests

Some of the genetic susceptibility tests offered by Australian company Genetic Technologies:

* Breast, bowel and ovarian cancer.

* Melanoma.

* Some forms of heart disease.

* Severe forms of childhood epilepsy.

* Memory loss.