“There’s no solution to this. I can’t have my organs back”, explains a 36-year-old American woman in desperation. She “no longer has a uterus, ovaries or breasts—all have been removed”. She was “mutilated and massacred” following a genetic test that showed that she had a “very high risk of developing breast or ovarian cancer”. In error.
Angelina Jolie made headlines in 2013 when she also underwent preventive hysterectomy and mastectomy after a genetic test revealed that she was carrying the BRCA1 gene that increases the risk of breast cancer. Having seen her 56-year-old mother die from this form of cancer, the Hollywood actress wanted to minimise the risk. Since this publicity, American women have jumped on the test bandwagon. The tests are readily available and reasonably priced at around one hundred dollars. Preventive surgery therefore tripled between 2006 and 2016.
The 36-year-old woman also “gave in to curiosity” and had the genetic test following the traumatic death of her mother. She was convinced by her doctor to undergo two extensive operations “to avoid the same suffering”. However, a “second nightmare” began shortly afterwards. A doctor instructed a laboratory to check the result of the genetic test. It turned out that the woman in question was not a carrier of the risk gene after all, and the first test had generated a false result. She is “completely devastated”. To put it in her own words, she feels she was “mutilated” but “cannot turn back the clock”.
Women have been left shaken and afraid since her story broke on 15 November 2018. Crumlin Hospital in Dublin decided to recheck the 3,500 genetic tests performed in its laboratories, focussing in particular on the 335 women in whom the infamous BRCA1 gene was detected. The aim is to “reassure women”. This is particularly relevant given the hospital’s history. In 2009, it wrongly stated that a patient was not carrying the risk gene. Not only was this incorrect but the woman concerned went on to develop an aggressive form of ovarian cancer.
For further reading:
United States – genetic test for breast cancer risk soon to be sold to the general public
Genetic screening for cancer has psychological repercussions
Genetic tests on sale to the general public: threat or promise?
France Info (15/11/2018)
Top Santé, Jane Roussel (17/11/2018)
Irish Times, Paul Cullen (19/11/2018)