Skip to main content

Table 1 (Fictional) case description

From: A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?

“A disease-causing genetic variant in the BRCA1 gene is identified in a 45-year-old female diagnosed with breast cancer. She is asked to participate in a study on the approach to informing at-risk relatives in hereditary breast and ovarian cancer, which generally follow an autosomal dominant inheritance pattern. During this study, the participant is asked whether she has informed her relatives. When she received the DNA test result, she had expressed the intention to inform her daughters. During the study, however, the participant informs the researcher that she felt unable to inform her two daughters (25 and 27 years old). She tried to tell them multiple times but felt that she could not find the right moment. The participant explains that she is afraid of upsetting herself and of burdening her daughters with such sensitive information and she thinks she should wait until her daughters are in their thirties and have their lives sorted out a bit more. In this particular setting, the researcher faces an ethical dilemma: the participant’s daughters are at an age when regular screening for breast cancer is advised when there is an increased risk and leaving them uninformed could potentially harm them. However, warning them would significantly violate the confidentiality agreement with the research participant.”