It is possible to identify a normative ethical framework of principles related to the seven dimensions of quality of genetic services, largely based on the ‘four principles’ approach of Beauchamp and Childress [1] — autonomy, beneficence, non-maleficence and justice. For example, dimension 3 (life sustaining) and dimension 5 (avoidance of harm) are associated with beneficence and non-maleficence, respectively. Some of the most interesting ethical issues, however, arise in relation to dimensions 6 and 7 (effectiveness and consumer satisfaction), which raise issues relating to autonomy and justice. Arguably, however, the focus of ethical discussion in the context of genetic services should be on the tensions between the good of the individual and the good of the community.

There has been considerable debate in the ethical literature about how the effectiveness of genetic services should be measured [2]. One obvious possibility is cost-benefit analysis, carried out in some countries, such as Poland. This typically involves measuring the cost of detection and prevention of a particular disorder against the expected cost of treatment, as described in the chapter from Israel. Although this approach does have ethical implications, in that it is arguably unethical to overlook questions of value for money in the context of limited resources, there are further issues to explore. There may not be agreement on what counts as a cost and what counts as a benefit (although the chapter from Hungary suggests the latter is more problematic than the former). For example, some may regard the birth of a child, regardless of genetic disorder, as a benefit; and there are concerns about the social impact of the use of cost-benefit analysis in this area. Concerns such as these raise questions about what the goals of genetic services should be. It has been claimed, for example, by the Danish Council of Ethics, that while there is a duty to help in medicine generally, the duty to help in genetics is of a special kind because the aim is not, typically, to provide a cure but in many if not most cases to offer information and facilitate choice. The Danish Council has also recognised, however, that too much information may be a burden rather than a help [3].

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