Presentation Title: “Epistemic Injustice and PGT-M in Relation to BRCA Carriers in Japan”

Abstract:

BRCA1/2 pathogenic variants (hereditary breast and ovarian cancer: HBOC) are known to significantly increase the likelihood of developing breast and ovarian cancer in carriers. PGT-M (Preimplantation Genetic Testing for Monogenic disorder) is possible for BRCA1/2 carriers. The Japanese Society of Obstetrics and Gynecology (JSOG), which oversees PGT-M in Japan, has imposed severe restrictions on PGT-M, and adult-onset diseases like HBOC have long been excluded. Moreover, for the past two decades, a controlling image of PGT-M as something that discriminates against people with a disability has been intensely circulated by the media in Japan; thus, we are taking risks when we talk about PGT-M. On the other hand, shared decision-making policy has been increasingly advocated as an ideal model in medicine. Over time, research on the impact of BRCA1/2 test results on reproductive decision-making among carriers in the west has become available, and its findings imply that information regarding available reproductive options involving PGT-M should be provided for carriers in Japan. The author focuses here on epistemic injustice: injustice directed at our ability to claim to know things properly and participate in epistemic activities such as questioning and discussion. Chronically ill persons often suffer from epistemic injustice, and the discriminatory controlling image of PGT-M in Japanese society makes it hard for BRCA carriers to express interest in PGT-M or raise questions about the JSOG’s restriction of PGT-M. The author demonstrates that epistemic injustice in the form of testimonial injustice, hermeneutical injustice, and participatory injustice are prevalent among BRCA carriers interested in PGT-M. Their testimony and participation may be smothered as they are worried about the negative impact on the HBOC community. The fact that no argument has been given for PGT-M by BRCA carriers in Japan may mean that the carriers are forcedly self-silenced. It is worth pointing out that the injustices BRCA carriers may suffer are distinctively epistemic in nature.