Arguments against providing feedback
The arguments used against provision of genome information are of a deontological, consequentialist and pragmatic nature. Some theoreticians are concerned that the nature of the obligations in a doctor-patient relationship is completely different from that in a researcher-participant relationship (18, 19). Research is not intended to be of benefit to the participant. Those who harbour such an idea will soon fall prey to what has been referred to as «the therapeutic misconception» (20) – (22). Several sceptics, for example Forsberg and collaborators, argue that the obligations of the researcher, apart from not causing harm to or inflicting strain on the participants, primarily consist in maximising the generation of knowledge (23). This argumentation is frequently used in the context of population-based studies, in which many presumably healthy people participate (and furthermore, people are never invited to participate because they may possibly be ill). Furthermore, the insights to be gained from such basic research are intended to be of benefit to future groups of patients (24, 25). As part of a society with universal, evidence-based health services, we can say that we constantly receive something in return for our participation in medical research (23). Here, the ideal of mutuality is interpreted at the aggregate, collective level. We have no claim to individual benefits from participating in research projects, since we enjoy their advantages in the form of high-quality, evidence-based health services.
In a consequentialist perspective, it is further argued that the commitment to knowledge will be rendered more difficult if requirements to provide feedback are introduced (26, 27). The focus will change, since human and financial resources are diverted away from research towards individual facilitation, for example in the form of an increased need for quality assurance, more thorough interpretation of results, direct counselling and further follow-up of individuals and their families (14, 28).
The argument pertaining to limited obligations is also reinforced by the situation established by modern population studies and bio-bank research. Here, there is little similarity to a doctor-patient relationship. Instead, research is undertaken on a de-identified material that may have been donated many years earlier. The researchers involved never meet the research participants, many of the researchers have no medical training and the relationship to the participant is of a completely abstract nature (29).
Another argument based on consequentialist ethics focuses on how feedback of genetic risk information from research may harm individuals (30, 31), as well as increase the «medicalisation» of the population and thus give rise to unnecessary use of healthcare resources on presumably healthy people (32, 33). Refraining from providing feedback prevents any such harmful effects. Nobody will be worse off than they were prior to the research project, says Parker (34), thus claiming that provision of feedback from research is absolutely no obligation. In many cases, no provision of feedback may therefore be the safest option. According to Ossorio (27), one cannot be criticised for having treated the research participant merely as a means to an end in the Kantian sense, as long as the participant was informed in advance of this practice of non-provision of feedback.
The pragmatic argument focuses on the unsuitability of research results for provision of feedback: The data as such may be fraught with sequencing errors (35). For practical, technical, financial and scientific reasons, the requirements for quality may be somewhat lower than for corresponding diagnostic analyses. It can also be claimed that most of the genome information that has been generated, especially from population-based studies, is fraught with great uncertainty in terms of its validity and benefit at the individual level (36, 37).
In addition to these arguments, some claim that genome research has no special position or exception from research as such, and that findings that are important to individuals may also result from research of a «non-genetic» character. Insisting on provision of feedback from genome research may thus be seen as an expression of a genetic «exceptionalism», which is unfortunate at the individual as well as the social level (33). In a cultural sense, genetic variants may easily be ascribed with an exaggerated importance for the health and behaviour of individuals.
By themselves, these arguments do not preclude a recognition of the fact that researchers, like everybody else, have an obligation to save lives if they are in a position to do so. The question remains, however, whether this obligation to save lives is particularly relevant with regard to genetic predispositions for illness, according to those who oppose provision of feedback.