SUMMARISE:
The interaction between legal, ethical and social values, as expressed during the public engagement study, should not be underestimated: Both equality and access to healthcare services are enumerated rights in the South African Bill of Rights. The South African government has over the last generation actively promoted the values of the Constitution—and the Bill of Rights in particular—as the basis for nation-building and constructing a South African identity (Baines 1998; Msila 2007; Sauter 2015) In this light, the importance that the participants in the South African public engagement study on HHGE allocated to equal access for everyone to HHGE as a healthcare service makes sense and reflects the success of the valuebased nation-building process. Although there is no explicit reference to Ubuntu in the Constitution, Ubuntu is widely accepted as an underlying influence on the Constitution. As a worldview and value system, Ubuntu is part of the cultural heritage of the majority of South Africans. Accordingly, one can say with confidence that the Ubuntu ethic informed the thinking of many of the study participants, although not necessarily all. To be clear, we do not contend that the Ubuntu ethic is the sole reason for the outcome of the study, nor that the Ubuntu ethic is unique in placing value on the welfare of future generations, but rather that the Ubuntu ethic is an important part of understanding the outcome of the study.
While most of the participants in the South African public engagement study were skeptical of non-healthrelated applications of HHGE, an overwhelming majority of the participants supported HHGE for serious health conditions. However, this support did not
stand in isolation but was linked to distributive equality, and in the case of HHGE for less serious genetic
conditions there was an explicit appeal to distributive equality. Importantly, the vision for the governance of HHGE presented by the South African public engagement study is one in which the state plays an active role in ensuring distributive equality by investing
resources to make HHGE for serious health conditions accessible to everyone. This idea that distributive equality should be
accomplished by “levelling up,” not “levelling down,” has support in South Africa’s constitutional jurisprudence. In the case of Minister of Home Affairs v Fourie (1) SA 524 (CC), which legalized same-sex marriage in South Africa, Justice Albie Sachs, writing for a unanimous Constitutional Court bench, held as follows: “Levelling down so as to deny access to civil marriage
to all would not promote the achievement of the enjoyment of equality. Such parity of exclusion rather than of inclusion would distribute resentment evenly, instead of dissipating it equally for all. The law concerned with family formation and marriage requires equal celebration, not equal marginalization; it calls for equality of the vineyard and not equality of the graveyard.” In the context of HHGE for serious health conditions, the participants in the South African public engagement study clearly agreed with this interpretation
of equality.