Allow genetic screening for people planning to get pregnant: Health Council

All people who want to have children should be able to be screened to see if they are the carriers of hereditary conditions before they conceive the child, the Health Council advised the Ministry of Public Health on Wednesday. The Health Council stressed that its aim was not to prevent the births of children with serious illnesses but to inform people so that prospective parents who turn out to be carriers can choose whether they want to accept the risk.

People typically don’t know they carry hereditary conditions because being a carrier doesn’t cause symptoms. There is about a 1 percent chance that couples who want to have children are both carriers of the same disease. If that happens, their child has about a 25 percent chance of being born with that condition. About 1 in 400 children is born with a severe disease because both parents are carriers.

Health insurers currently only reimburse preconception screenings for prospective parents known to have an increased risk of being a carrier. For example, couples who come from countries where malaria is common and who, therefore, have a higher risk of certain blood diseases can get the screening reimbursed. Couples from “genetically isolated communities” like Volendam can also get the screening refunded, according to NOS.

The Health Council believes expanding this screening to all prospective parents who want it could have added value. It will enable parents who turn out to be carriers to make informed choices about the risk for their future children. The Health Council expects that if preconception screening becomes available for everyone, several hundred couples will use it per year.

The Council recommended a pilot to investigate the most suitable way to offer this screening and to reach all prospective parents.