Icelanders can now visit a website to learn whether or not they carry a genetic mutation which drastically increases their risk of cancer. Created by Icelandic company deCode Genetics and using genetic data from their research, the website provides the service to Icelanders free of cost. RÚV reported first.
Nearly 1% of Icelanders carry the genetic mutation, which is in the genome BRCA2 and is known as 999del5. Women who carry the mutation are 80% more likely to be diagnosed with breast or ovarian cancer that women who do not. Men who carry the gene are also more likely to be diagnosed with cancer, especially prostate cancer. “According to our data, 999del5 is the gene which most affects Icelanders’ lifespan,” the website states.
A task force on the use of genetic data in the disease prevention of individuals suggested the Directorate of Health should oversee how the data was shared with individuals. Dr. Kári Stefánsson, founder and CEO of deCode Genetics, was on the task force but resigned over disagreement on the issue. “I resigned from this committee and told committee members that if they came to the conclusion that we could not approach these women to save their lives then we would set up such a website.”
“I have been fighting in order to reach these women who have this mutation because they have an 86% chance of getting fatal cancer,” stated Kári. “They live 12 years shorter than those who don’t have the mutation and they are three times more likely to die before 70 than those who do not have this mutation. So these are women who live with an acute threat to their life because they have this mutation.”
“With this deCode Genetics hopes to thank the Icelandic public, which has shown great generosity and responsibility when it comes to participating in scientific research carried out by the company,” states a press release.