Header

UZH-Logo

Maintenance Infos

Nobody's DNA but mine


Loi, Michele (2017). Nobody's DNA but mine. Journal of Medical Ethics:Epub ahead of print.

Abstract

1. I am grateful to the respondents (and the journal editors) for the opportunity provided, to clarify the concept of a libertarian right to test (LRT in what follows) and its normative implications. To sum up, I concede that genomes have a normatively salient informational aspect, that exercising the LRT may cause informational harm and violate rights of genetically related individuals, and that this is relevant to the regulation of genetic testing. But such considerations are logically compatible with a non-absolute LRT and its libertarian justification. The LRT is practically relevant because it inverts the burden of justification and recognising a LRT may affect the way in which other rights are protected in a conflict of rights case. I will try to clarify this further, in what follows. Consider B, an individual who is, and is aware of being, genetically related to A. 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. This is the idea of LRT as a prima facie right only. Regulation responsive to both A’s LRT and B’s other rights will aim to permit A’s testing, while including ‘adequate safeguards designed to limit dissemination of A’s genetic information commonly held with B’.1 A prima facie LRT is however practically relevant, in that it shifts the burden of justification on regulators. They must justify limits to the exercise of an individual’s LRT by showing that they are necessary to protect at least as important rights of others. Conversely, regulators violate A’s LRT by requiring that A justify his testing, in the absence of a (reasonably presumed) violation of rights. The respondents do not accept this ‘burden of justification reversal’ implied by the LRT as a prima facie right. 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 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. 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. One can own a physical book and have limited rights over the information that can be extracted from it. This is different from owning the information as such (ie, the information type, as opposed to a particular token of it). Intellectual property legislation attributes initial legal ownership of the information type to the author of a creative work, not to the owners of physical books. Rights to the genome are analogous to those acquired by virtue of owning a book, not to an author’s intellectual property rights. Self-ownership gives one a special moral authority over using one’s own DNA, also to extract the information it contains. It does not give one a special authority over all potential instantiations of the same 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. He ultimately rejects self-ownership to avoid these unwelcome consequences, which, he argues, it entails. Left-libertarians, however, disagree with Cohen on the distributive implications of self-ownership.2 Likewise, some may reject the LRT in order to avoid the distributive consequences of a right to extract information from own genomes. This conclusion would be premature, as one cannot determine the distributive consequences of the LRT, in isolation from a broader debate concerning other rights, including rights to personal information.

Abstract

1. I am grateful to the respondents (and the journal editors) for the opportunity provided, to clarify the concept of a libertarian right to test (LRT in what follows) and its normative implications. To sum up, I concede that genomes have a normatively salient informational aspect, that exercising the LRT may cause informational harm and violate rights of genetically related individuals, and that this is relevant to the regulation of genetic testing. But such considerations are logically compatible with a non-absolute LRT and its libertarian justification. The LRT is practically relevant because it inverts the burden of justification and recognising a LRT may affect the way in which other rights are protected in a conflict of rights case. I will try to clarify this further, in what follows. Consider B, an individual who is, and is aware of being, genetically related to A. 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. This is the idea of LRT as a prima facie right only. Regulation responsive to both A’s LRT and B’s other rights will aim to permit A’s testing, while including ‘adequate safeguards designed to limit dissemination of A’s genetic information commonly held with B’.1 A prima facie LRT is however practically relevant, in that it shifts the burden of justification on regulators. They must justify limits to the exercise of an individual’s LRT by showing that they are necessary to protect at least as important rights of others. Conversely, regulators violate A’s LRT by requiring that A justify his testing, in the absence of a (reasonably presumed) violation of rights. The respondents do not accept this ‘burden of justification reversal’ implied by the LRT as a prima facie right. 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 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. 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. One can own a physical book and have limited rights over the information that can be extracted from it. This is different from owning the information as such (ie, the information type, as opposed to a particular token of it). Intellectual property legislation attributes initial legal ownership of the information type to the author of a creative work, not to the owners of physical books. Rights to the genome are analogous to those acquired by virtue of owning a book, not to an author’s intellectual property rights. Self-ownership gives one a special moral authority over using one’s own DNA, also to extract the information it contains. It does not give one a special authority over all potential instantiations of the same 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. He ultimately rejects self-ownership to avoid these unwelcome consequences, which, he argues, it entails. Left-libertarians, however, disagree with Cohen on the distributive implications of self-ownership.2 Likewise, some may reject the LRT in order to avoid the distributive consequences of a right to extract information from own genomes. This conclusion would be premature, as one cannot determine the distributive consequences of the LRT, in isolation from a broader debate concerning other rights, including rights to personal information.

Statistics

Citations

Dimensions.ai Metrics

Altmetrics

Downloads

1 download since deposited on 01 Mar 2018
1 download since 12 months
Detailed statistics

Additional indexing

Item Type:Journal Article, refereed, further contribution
Communities & Collections:04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:11 July 2017
Deposited On:01 Mar 2018 08:58
Last Modified:14 Mar 2018 18:06
Publisher:BMJ Publishing Group
ISSN:0306-6800
OA Status:Closed
Free access at:Publisher DOI. An embargo period may apply.
Publisher DOI:https://doi.org/10.1136/medethics-2017-104188

Download

Content: Published Version
Filetype: PDF - Registered users only
Size: 392kB
View at publisher