Personal utility is inherent to direct-to-consumer genomic testing

被引:10
作者
Chung, Matthew Wai Heng [1 ]
Ng, Joseph Chi Fung [1 ]
机构
[1] Univ Hong Kong, Sch Biomed Sci, Li Ka Shing Fac Med, 1-F,Lab Block,21 Sassoon Rd, Hong Kong, Hong Kong, Peoples R China
关键词
Genetic Screening; Testing; Genetic Information; Regulation; Predictive Genetic Testing; MEDICINE; HEALTH; DNA;
D O I
10.1136/medethics-2015-103057
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
People for and against direct-to-consumer (DTC) genomic tests are arguing around two issues: first, on whether an autonomy-based account can justify the tests; second, on whether the tests bring any personal utility. Bunnik et al, in an article published in this journal, were doubtful on the latter, especially in clinically irrelevant and uninterpretable sequences, and how far this claim could go in the justification. Here we argue that personal utility is inherent to DTC genomic tests and their results. We discuss Bunnik et al's account of personal utility and identify problems in its motivation and application. We then explore concepts like utility and entertainment which suggest that DTC genomic tests bring personal utility to their consumers, both in the motivation and the content of the tests. This points to an alternative account of personal utility which entails that entertainment value alone is adequate to justify DTC genomic tests, given appropriate strategies to communicate tests results with the consumers. It supports the autonomy-based justification of the test by showing that DTC genomic test itself stands as a valuable option and facilitates meaningful choice of the people.
引用
收藏
页码:649 / 652
页数:4
相关论文
共 21 条
[1]   Direct-to-consumer pharmacogenomic testing is associated with increased physician utilisation [J].
Bloss, Cinnamon S. ;
Schork, Nicholas J. ;
Topol, Eric J. .
JOURNAL OF MEDICAL GENETICS, 2014, 51 (02) :83-89
[2]   Impact of direct-to-consumer genomic testing at long term follow-up [J].
Bloss, Cinnamon S. ;
Wineinger, Nathan E. ;
Darst, Burcu F. ;
Schork, Nicholas J. ;
Topol, Eric J. .
JOURNAL OF MEDICAL GENETICS, 2013, 50 (06) :393-400
[3]   How behavioral economics can help to avoid 'The last mile problem' in whole genome sequencing [J].
Blumenthal-Barby, Jennifer S. ;
McGuire, Amy L. ;
Green, Robert C. ;
Ubel, Peter A. .
Genome Medicine, 2015, 7
[4]   Personal utility in genomic testing: is there such a thing? [J].
Bunnik, Eline M. ;
Janssens, A. Cecile J. W. ;
Schermer, Maartje H. N. .
JOURNAL OF MEDICAL ETHICS, 2015, 41 (04) :322-326
[5]   Consumers report lower confidence in their genetics knowledge following direct-to-consumer personal genomic testing [J].
Carere, Deanna Alexis ;
Kraft, Peter ;
Kaphingst, Kimberly A. ;
Roberts, J. Scott ;
Green, Robert C. .
GENETICS IN MEDICINE, 2016, 18 (01) :65-72
[6]   Public health perspective: from personalized medicine to personal health [J].
Cesuroglu, Tomris ;
van Ommen, Ben ;
Malats, Nuria ;
Sudbrak, Ralf ;
Lehrach, Hans ;
Brand, Angela .
PERSONALIZED MEDICINE, 2012, 9 (02) :115-119
[7]  
Cho Ja-Hyun, 2013, Value Health Reg Issues, V2, P147, DOI 10.1016/j.vhri.2013.01.010
[8]   Motivations and Perceptions of Early Adopters of Personalized Genomics: Perspectives from Research Participants [J].
Gollust, S. E. ;
Gordon, E. S. ;
Zayac, C. ;
Griffin, G. ;
Christman, M. F. ;
Pyeritz, R. E. ;
Wawak, L. ;
Bernhardt, B. A. .
PUBLIC HEALTH GENOMICS, 2012, 15 (01) :22-30
[9]   Charting a course for genomic medicine from base pairs to bedside [J].
Green, Eric D. ;
Guyer, Mark S. .
NATURE, 2011, 470 (7333) :204-213
[10]   Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issues [J].
Hallowell, Nina ;
Hall, Alison ;
Alberg, Corinna ;
Zimmern, Ron .
JOURNAL OF MEDICAL ETHICS, 2015, 41 (04) :317-321