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Do women know of gene mutations?

Þórdís Jónsdóttir, MPH in public health sciences.

"The study focuses on examining Icelandic women's sentiments towards both genetic counselling and genetic testing, as well as whether they want to know if they are the bearers of the BRCA2-gene. That mutation increases the risk of breast cancer and other types of cancer considerably. This is a great dilemma, but not many studies take the will of the women themselves into account. 

This says Þórdís Jónsdóttir, MPH in public health sciences, who is currently working on data from a survey among Icelandic women on their interest in knowing rather controversial genetic information about their own bodies. Þórdís received a grant from the Student Innovation Fund to work on her study, and she will continue it during her doctoral studies. 

Þórdís Jónsdóttir

The results from Þórdís' study are pending, but a similar study was made 17 years ago where 74% of women showed interest in taking a genetic test. Þórdís says it is important to see whether the ratio has changed or remained the same. 

Þórdís Jónsdóttir, MPH in public health sciences.

"This research will hopefully provide  the necessary insight to handle matters according to women's wishes. This is an ethical dilemma that can be debated at length and not much has happened in the last 20 years, but the time for decisions is upon us and the more enlightened we are the better decisions we take. The results could thus possibly help guide the decision making in what to do with this unique information that already exists on the Icelandic nation and how to proceed," says Þórdís. 

The results from Þórdís' study are pending, but a similar study was made 17 years ago where 74% of women showed interest in taking a genetic test. Þórdís says it is important to see whether the ratio has changed or remained the same. 

"I am not a gene carrier myself," says Þórdís, "but many in my family are and it has had significant and diverse effects knowing of this mutation and the decisions involved. I found this difficult, and considered that different decision making processes might be interesting, but information was lacking to assist women in this position." 

Þórdís says that individualized treatment and preventive measures have been on the rise all over the world due to the rapid development in genetics, making questions like the ones in her survey increasingly pressing 

Supervisors: Unnur Anna Valdimarsdóttir, professor at the Faculty of Medicine, Laufey Tryggvadóttir, managing director at the cancer registry, and Heiðdís B. Valdimarsdóttir, Professor at the Reykjavík University's School of Business, Psychology.