Statement from a Patient
摘要
We, the hereditary breast and ovarian cancer patient support group “Clavis Arcus” and the genetic disease patient and family support group “Genetic Alliance JP,” have been engaged in patient support activities, research projects, and addressing ELSI issues for many years. As medical technology advances, there is a need for a medical care delivery system and social understanding that enables us to obtain accurate information about the medical care available to us and to accept whatever choice is made in an appropriate, safe, and secure manner. In recent years, while more patients and their blood relatives are undergoing genetic testing as part of their treatment, there have been calls for information about reproductive medicine and PGT-M from parties with hereditary breast and ovarian cancer. Many are considering PGT-M and gathering information. Conversely, it is necessary to consider the values and thoughts of those who do not wish to undergo PGT-M. As a hereditary condition, multiple individuals within a family may be affected, and the experiences and perspectives on childbirth can vary based on the severity of the disease and their living environment. I believe that in supporting patients, it is essential to respect each person’s thoughts and feelings. Each individual should be consulted after being informed that their perspectives are shaped by their unique way of life and environment and that none of these perspectives can be dismissed. I maintain a neutral position, neither recommending nor discouraging PGT-M. Another important question is how much information needs to be provided in places where people share their thoughts with each other and in individual consultations and how to provide support in a way that is not perceived as strongly pointing to the ideas of one side or the other. For those of us who have developed a disease, it is natural to wish for the health of our own children, and it is common to hope that our descendants born in the future will not develop the same disease or can avoid developing it. I would like to share with you the current situation we have been able to obtain from the support of patients and others in Japan regarding their thoughts on fertility and PGT-M.