Direct to consumer genetic testing and the libertarian right to test

Abstract

Loi recently proposed a libertarian right to direct to consumer genetic testing (DTCGT)- independent of autonomy or utility-reflecting Cohen's work on self-ownership and Hohfeld's model of jural relations. Cohen's model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal physical copy of the genome, triggering rights and interests of relatives that may differ from the rights and interests of others, that is, individual consumers, testing providers and regulators. Loi argued that regulatory interference with exercise of the right required justification, whereas prima facie exercise of the right did not. Justification of regulatory interference could include 'conflict with other people's rights', 'aggressive' use of the genome and 'harming others'. Harms potentially experienced by relatives as a result of the individual's exercise of a right to test include breach of genetic privacy, violation of their right to determine when, and if, they undertake genetic testing and discrimination. Such harms may justify regulatory intervention, in the event they are recognised; motives driving 'aggressive' use of the genome may also be relevant. Each of the above criteria requires clarification, as potential redundancies and tensions exist between them, with different implications affecting different groups of rights holders.

Nobody’s DNA but mine

“…The respondents object that the grounding in self-ownership of the LRT does not logically extend to the informational aspect of the genome 1. This points out an important restriction of the LRT’s logical scope, which my first paper did not explain.…”

“…Admittedly, while person A has a LRT, the interests of person B should also be protected 1. B has also rights against informational harm, which A risks violating by ‘unilaterally […] revealing information about the genomic sequence of children, parents, or siblings who may not have consented’ 1. To avoid this outcome, A’s exercise of his LRT might be limited or blocked.…”

“…The respondents object that, when A’s test reveals a genetic susceptibility of A, ‘A’s exercise of their [sic] right to test their genome necessarily interferes with B’s right not to have their [sic] rights modified’ 1. Since A’s exercise of self-ownership necessarily conflicts with B’s exercise of equivalent rights, A’s self-ownership cannot be ‘the starting point for consideration, rather than B’s right not to test’ 1…”

“…This points out an important restriction of the LRT’s logical scope, which my first paper did not explain. It can be conceded that A’s self-ownership rights do not cover the ‘commonly-held information derived from […] physical copies [of the same genome]’ 1. Consider the difference between legal ownership of a physical book (a physical object sold by physical libraries) and having intellectual property rights over its informational content.…”

“…Final remarks on GA Cohen’s position:1 Cohen’s rejection of self-ownership is motivated by the need to reject its implications for the distribution of raw worldly resources. Cohen argues that self-ownership leads to unequally owned world in which some persons lack autonomy and can be used as means.…”