Published May 16, 2013
Chairman and president of deCODE genetics Inc., Kári Stefánsson, says he wants to let Icelanders know if they carry the gene for breast cancer.
“As an old school doctor, I feel that we have a responsibility to contact these people,” Kári told mbl yesterday. deCODE genetics claims to have coded information about 2400 Icelanders with the breast cancer gene, BRCA2, of which about half are women with an 80% likelihood of developing breast cancer.
While the breast cancer gene BRCA2 is more prominent among the Icelandic population, there is also a risk of developing breast cancer from another gene, the so-called BRCA1. However, in order to pursue further research into the matter, deCODE genetics needs permission from the Data Protection Authority, and Kári says its a question of gaining national consent.
The ethical debate over whether people should be notified if they carry the cancer gene was rekindled in Iceland after actor Angelina Jolie published an article in the New York Times on Monday about her decision to undergo a preventative double mastectomy in light of the fact that she carries the BRCA1 gene and her mother died of breast cancer.
In Iceland, the number of women who choose to undergo preventative mastectomies has been increasing, with 6-7 women undergoing the procedure in the past 6 months, RÚV reports.
Although Kári has stated that deCODE is willing to pursue research and inform people free of charge , he faces resistance from health ministers and the board of public health who recently rejected his request to further develop such information due to privacy-related concerns.
Read follow-up Grapevine story here.