Genetic testing and research in Lynch Syndrome - is it a choice or a responsibility?

Results Choice in genetic testing and research does not appear to be the key value for participants in this study; instead they are influenced by a sense of responsibility [3]. Choice for them is an important right, one exercised by other family members who declined a test. Their narratives however, illustrate three moral imperatives that transform choice into responsibility; they are: responsibility to children, to self and to scientific progress (the greater good). Participants who were parents discussed a paramount duty of care to children as the main motivating factor when accepting a test. Those whose parents had declined genetic testing experienced disappointment and referred to the right to choose as a means of ethically managing that. Genetic testing was also viewed in the context of a Health Belief model [4,5] framing those who declined testing as neglectful of a moral imperative to self care. Participants sometimes conflated choosing a genetic test with choosing life and used cautionary tales of those who declined testing and developed cancer to justify decisions and persuade others considering a test. Within this moral framework an obligation to participate in genetic research is narrated from differing perspectives. A pioneering identity from being the first known family characterising the gene gave participants value and led to kin-like reciprocation invoking a desire to repay perceived medical investment in the “family”. A strong belief was held that genetics is key to the advancement of medicine.