When couples or individuals are planning to have children, they may choose to learn more about their genetic makeup before conception. Through preconception genetic carrier screening (PGCS), it is possible to test whether one or both partners carry genetic variants that, on their own, do not cause health problems, but which — when combined — could increase the risk of certain inherited conditions in their children.
The aim of PGCS is to provide prospective parents with information that may help them better understand potential genetic risks and consider their reproductive options. PGCS is not yet standard practice in most European countries, although this may change as technologies develop and awareness increases.
As preconception genetic carrier screening becomes more widely available, a number of important ethical and societal questions arise, including:
Who should be offered PGCS? Should it be available to everyone as part of public healthcare, or limited to specific groups, such as people undergoing fertility treatment or those with known genetic risks?
Which conditions should be included? How should screening panels be defined, and should they vary between countries or communities where certain inherited conditions are more common?
There are also important questions about access and fairness:
How can equitable access be ensured? How can societies make sure screening is available to all, regardless of financial means, education or cultural background?
How can informed and voluntary decisions be supported? How can people be supported to make meaningful choices without feeling social or moral pressure to participate?
It will be essential to address these questions to ensure preconception carrier screening supports personal autonomy, equity and responsible decision-making.
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