The rise in prenatal screening and preimplantation genetic diagnosis over the past 30 or so years has been accompanied by deselection of fetuses and embryos. To our knowledge, governments or international bodies do not systematically collect society-wide reliable data on the grounds for and numbers of selective abortions and deselected embryos. As society enters an era in which less-invasive prenatal testing and discussions about possible human reproductive genome editing promise to accelerate prenatal selection, the need for good data is compelling.

Many people are concerned about the social effects these technologies might have. What if more countries move towards the elimination of Down's syndrome, as in Iceland? Is there a difference, in principle, between therapy and enhancement? Ten years from now, will trait selection be a fact of society? Without good data, people have two poor choices: to ignore possible societal effects, or to interfere in the doctor–patient relationships in which these technologies are deployed. We suggest a third way.

We call for the systematic collection of anonymized data on how many embryos and fetuses are deselected per institution per year, and for which conditions. Reported to a government agency or international body, the information would provide a baseline against which jurisdiction-specific trends in selection could be assessed.

People who have disabilities, together with other key stakeholders, laypeople and experts, would then be in a position to assess the social impact of human selecting technologies and to make recommendations for action to mitigate negative effects as appropriate.