“Half a year later he had not survived” • The system is criticized – the responsibility ends up patients
Both BRCA1 and BRCA2 are high -risk genes for breast cancer and can mean a 50-80 percent increase in risk of getting sick. In addition, about 20 percent of those with breast cancer have a relative with the same disease.
In Sweden, the responsibility lies with the patient – not the care – to contact family members who may have the same gene mutation, even though the care has knowledge of both family trees and family relationships. The system has been criticized and is now investigating the Fort-funded Direct study, led by Anna Rosén, if more would test themselves for hereditary cancer if the care contacts instead.
– We do not know how many relatives are reached in Sweden, but we know that information does not always arrive. Maybe there are more people who would test themselves if they knew more, she tells Forte.
The information saved the cousin’s life
Amanda Frank carries the BRCA2 mutation and received information about heredity through a distant relative. She describes the time after the gene message as tumultuous – at the same time she needed to inform a cousin.
– We don’t have much contact in our family so it was a bit tricky, I didn’t even find his address so I wrote a letter to his mother, she tells TV4 News.
Once the cousin got the letter and tested himself, a long time was discovered and aggressive prostate cancer.
– If he had received the information six months later, he would not have survived, it was really scary. Imagine if I had been pushing to hear from me, ush what horrible.
The patient’s responsibility is questioned
The cousin’s cancer message caused Amanda Frank to question the division of responsibilities between the patient and the health care.
– It felt a little wrong that the responsibility lay on me, also considering that we have no close relationship. I do not think that responsibility should be on us individuals. We cannot answer questions and do not have the knowledge that the care is with.
She also emphasizes the risk that family members will be notified in a less appropriate way when the emotions are strong after a gene message.
– I was in shock after my message. There is a great risk that one can be strongly affected by their emotions and there may be a fear that the information is based on the wrong way when contacting distant family members.
Majority want to be informed by care
Research shows that nine out of ten want to know if they carry a hereditary risk of cancer and most people want the information directly from the care. Researcher Anna Rosén believes that it can be difficult for patients to contact relatives on their own.
– Patients almost always want the relatives to know. But it is not always easy to implement, many have just got a cancer disease and some find it difficult to contact more distant relatives, says Rosen according to Forte.