Direct to consumer genetic testing and the libertarian right to test

Wendy Elizabeth Bonython, Bruce Baer Arnold

Research output: Contribution to journalArticleResearchpeer-review

2 Citations (Scopus)
3 Downloads (Pure)

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.

Original languageEnglish
Pages (from-to)787-789
Number of pages3
JournalJournal of Medical Ethics
Volume44
Issue number11
DOIs
Publication statusPublished - 1 Nov 2018
Externally publishedYes

Fingerprint

Genetic Testing
Genome
Ownership
interference
Genetic Privacy
redundancy
privacy
DNA
discrimination
autonomy
human being
event
Direct-To-Consumer Screening and Testing
Group
Exercise
Harm
Self-ownership
Justification
Testing
Interference

Cite this

@article{2280679a8ef84ddb89999f16937a443c,
title = "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.",
author = "Bonython, {Wendy Elizabeth} and Arnold, {Bruce Baer}",
year = "2018",
month = "11",
day = "1",
doi = "10.1136/medethics-2016-103778",
language = "English",
volume = "44",
pages = "787--789",
journal = "Journal of Medical Ethics",
issn = "0306-6800",
publisher = "BMJ Publishing Group",
number = "11",

}

Direct to consumer genetic testing and the libertarian right to test. / Bonython, Wendy Elizabeth; Arnold, Bruce Baer.

In: Journal of Medical Ethics, Vol. 44, No. 11, 01.11.2018, p. 787-789.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Direct to consumer genetic testing and the libertarian right to test

AU - Bonython, Wendy Elizabeth

AU - Arnold, Bruce Baer

PY - 2018/11/1

Y1 - 2018/11/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85049139808&partnerID=8YFLogxK

U2 - 10.1136/medethics-2016-103778

DO - 10.1136/medethics-2016-103778

M3 - Article

VL - 44

SP - 787

EP - 789

JO - Journal of Medical Ethics

JF - Journal of Medical Ethics

SN - 0306-6800

IS - 11

ER -