Politics of inclusive consultation?: How the voices of disabled people’s rights and feminist campaigners prevailed in the debate on new eugenics in Japan

Abstract

ABSTRACT Access to the procedure known as pre-implantation genetic testing for monogenic disorders (PGT-M), which is part of an arsenal of treatments that drives the wave of new, “grassroots eugenics,” remains extremely limited in Japan. Many countries with advanced technological and biomedical know-how gave PGT-M a legal status soon after the pioneering case in London’s Hammersmith Hospital in 1988 and have since applied it widely. By contrast, in Japan, PGT-M has been implemented only on a small scale. Moreover, the decisions about it are made on a case-by-case basis by the self-governing Japan Society of Obstetrics and Gynecology (JSOG), thus implying that it has not yet been accepted as standard clinical practice. Utilizing primary and secondary sources, this article constructs a thick description of the standoff over PGT-M in Japan since the early 1990s. It illustrates how individuals of reproductive age who are impacted by a heritable condition and their families have been pitched against groups identifying as feminist, who see the procedure as unnecessary pressure on women and those working to promote disabled people’s rights, as well as professional medical societies involved in the diagnosis and the management of genetic disorders. By creating this description, the article challenges claims by bioethicists who view the universal acceptance of a new-eugenics procedure such as PGT-M as a foregone conclusion. Simultaneously, it also demonstrates how in this case of conflict resolution in Japan the conservative stance of those at the periphery prevailed over the interests of those with a direct stake.