Words by

Alice Demurtas

Icelandic research centre deCODE Genetics will open a website today where women will be able to find out whether or not their body is affected by a genetic mutation that increases the risk of breast cancer, RÚV reports.

The mutation in question refers to the BRCA2 gene, which is responsible for producing proteins useful for tumour suppression. These proteins are in fact essential to the body in order to repair damaged DNA. When the BRCA2 gene mutates, it stops working as efficiently thus increasing the risk of cancer.

Said mutations are sometimes inherited, and they are particularly important for women as they increase their risk to develop fatal ovarian or breast cancer at a young age—a percentage that oscillated around the 86% mark, according to CEO and founder of deCODE Kári Stefánsson. “These women live 12 years less than people who don’t have these mutations and are three times more likely to die before reaching 70 years of age,” Kári explains. “So we’re talking about women whose life is at risk because of these mutations.”

deCODE is now in possession of extensive genetic information, including the names of about 1,000 individuals in Iceland who bear these mutations. Kári Stefánsson has therefore expressed his wish to contact these people, as he believes that providing women with the necessary knowledge about their likelihood to develop cancer can be useful to prevent it.

A committee investigating the ethical and medical benefits of sharing genetic information with patients for illness prevention, however, said such measures would be disrespectful towards people who prefer not knowing. The committee also said that people who do want to retrieve this information should be able to do so.

Kári, who was originally in the committee himself, believes this decision violates the tradition in Iceland of trying to save people whose lives are in danger, whenever possible. His response was therefore to construct a website called arfgerd.is, where women who wish to know about their genes and likelihood of developing cancer will be able to do so. The website, which will be avialable today, will be overseen by the Directorate of Health and will be accessible through electronic ID.