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Cancer is a disease caused by a complex combination of environmental and genetic factors, but it is known that genetic predisposition (germline genetic variant) plays a significant role in the onset of the disease in around 5% to 10% of cancer cases. Hereditary breast and ovarian cancer (HBOC) is one example of this kind of hereditary cancer.
 
This book looks at how patients diagnosed with, or who potentially may have, HBOC and their families perceive the risk of developing cancer and how they communicate with each other. Since there were no previous publications focused on the subject in Japan, I conducted interviews and research to capture the diverse experiences and challenges faced by patients and their families.
 
In the case of inherited diseases, not only HBOC, but also other genetic diseases where genetic changes can be passed from parent to child, there is often difficulty in talking to family members about the disease. Some studies have reported of children who grew up without being told the name of their disease by their parents and were shocked when they learned of it in adulthood. There were also instances of patients facing challenges in figuring out when and how to tell their families about their disease.
 
In this book, I refer to communication within a family regarding genetic predisposition as “telling genetic risk.”
 
Diagnostic or prognosis disclosures are made by medical practitioners to patients whose diagnosis or prognosis has been confirmed. In contrast, “telling genetic risk” is the act of communicating the predicted future probability of disease onset to apparently “healthy” individuals with no current symptoms of disease.
 
Medical guidelines strongly recommend that patients be informed of the risks of HBOC at an early stage and that the information be widely shared among unaffected genetic relatives. This is because the medical benefits are judged to be significant, such as early detection through surveillance, the use of effective therapeutic agents like molecular-targeted drugs, and risk-reducing surgery options.
 
There is an expectation that cancer patients will share information, but the question is how they will behave. While the medical perspective is only one element, the experiences of patients and their families suggest that the communication styles and strategies can be highly complex and diverse. This can be dependent on people’s values, their perceptions of the personalities and conditions of the family members they are communicating with, and their relationships with them.
 
In this book, I clarified how patients made decisions on knowing their risk by undergoing genetic testing and on risk-reducing breast and gynecological surgery (Chapter 5), parents’ intentions and their decisions about whether or what to tell their children (Chapter 6), as well as conflicts or difficulties that arose when telling their siblings and relatives (Chapter 7).
 
Finally, predicting the risk of developing a disease before its onset and implementing preventive interventions has become an emerging healthcare strategy applied to a variety of diseases, including dementia, diabetes, and cardiovascular diseases.
 
As we enter an era in which it is becoming increasingly clear that all of us are at risk in some way, how will the ways of communication risks evolve? I hope that this book will provide new insights for those interested in public understanding and behavior relating to healthcare and illness, as well as family communication itself.
 

(Written by: RI Izen / August 07, 2024)