Non-professionals’ evaluations of gene therapy ethics

Although the moral responsibilities of clinicians and researchers in the new genetics are exhaustively reflected upon, much less attention has been paid to the factors affecting the moral reasoning of non-professionals when they reflect on genetic issues. In this paper, we compare the moral evaluations of somatic gene therapy (SGT) made by some of its potential consumers (patients) and its providers (medical professionals). The results highlight significant differences between professional opinion and non-professional evaluations. Medical professionals shared a moral evaluation of SGT that (a) based its acceptability on a strong therapeutic imperative, (b) grounded this in an unproblematic separation of identity and disability/illness, and (c) generally did not see SGT as ethically different from other medical interventions. Prospective patients (a) often questioned the effectiveness of “therapeutic” interventions, (b) could derive a strong sense of identity from disability/illness, and (c) sometimes saw genetic interventions as changing a personʹs identity, either directly (through the genes) or indirectly (through altered life experience). We discuss the implications of these differences for the professional and public debate on the ethics of gene therapy. Our results highlight the need to take into account non-professionals’ views of SGT.