89% of Faroese support genetic testing for hereditary diseases in Faroe Islands

A recent survey indicates that 89% of Faroese individuals of childbearing age believe that genetic testing for five hereditary diseases—Sucla2, AGS, AROKS, JEB, and TBCD—should be available in the Faroe Islands. Only 1% of respondents disagreed with this statement.

The survey, commissioned by the hereditary disease advocacy group Arvasjúkan, was conducted earlier this year with participation from 4,495 Faroese aged 18 to 45. The primary aim of the survey is to gauge public opinion on genetic screenings, emphasizing that everyone should have the opportunity to be tested for these hereditary conditions, as stated by advocate Karin Laksafoss. Currently, couples are offered testing if they have a child diagnosed with one of these genetic diseases.

Karin Laksafoss and Sámal Rasmussen co-founded Arvasjúkan after their daughter Sagu passed away at just five months old due to the hereditary disease Sucla2, also known as the “Faroese disease.” Together with the Health Research Unit of the Hospital Service and support from Betri and Mowi, they launched the survey.

The ethical council is presently discussing whether society should offer genetic testing for these hereditary diseases. During a session earlier this week, Bergur Debes Joensen, the council’s chairman, along with members Katrin Kallsberg, a gynecologist, and Noomi Gregersen, project manager at Fargen, expressed that this is a complex issue.

It is estimated that about 20% of the Faroese population carries one of these five hereditary diseases, leading to the birth of approximately one to two affected children each year in the islands. The survey results are accessible on the Arvasjúkan website.