(Lynch Syndrome) What can we Learn from Patients’ Ethical Thinking about the right ‘not to know’ in Genomics?

open access: What can we Learn from Patients’ Ethical Thinking about the right ‘not to know’ in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling - Bioethics 

 The data show that family relationships were put
under pressure when some family members declined to
accept genetic testing. Interestingly, only two of the eight
who declined testing responded to the initial invitation
letter and none participated in the study. Thus those who
declined to be tested had no representative voice to give
a counter-narrative in the data. Genetic test decliners
minority voices remained unrepresented in the study. If
test decliners did not contribute to the study because
they felt negatively judged, then this poses challenges for
ethical thinking about those who decline in contemporary
approaches to genomic medicine.