research-article

Biological Citizen Publics: Personal Genetics as a Site of Public Engagement with Science

Authors:

Stacey Kuznetsov,

Eric PaulosAuthors Info & Claims

C&C '15: Proceedings of the 2015 ACM SIGCHI Conference on Creativity and Cognition

Pages 303 - 312

https://doi.org/10.1145/2757226.2757246

Published: 22 June 2015 Publication History

Abstract

Low-cost genetic sequencing, coupled with novel social media platforms and visualization techniques, present a new frontier for scientific participation, whereby people can learn, share, and act on data embedded within their own bodies. Our study of 23andMe, a popular genetic testing service, reveals how users make sense of and contextualize their genetic results, critique and evaluate the underlying research, and reflect on the broader implications of genetic testing. We frame user groups as citizen science publicsgroups that coalesce around scientific issues and work towards resolving shared concerns. Our findings show that personal genetics serves as a site for public engagement with science, whereby communities of biological citizens creatively interpret, debate, and act on professional research. We conclude with design trajectories at the intersection of genetics and creativity support tools: platforms for aggregating hybrid knowledge; tools for creative reflection on professional science; and strategies for supporting collaborations across communities.

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Index Terms

Biological Citizen Publics: Personal Genetics as a Site of Public Engagement with Science
1. Human-centered computing

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cover image ACM Conferences

C&C '15: Proceedings of the 2015 ACM SIGCHI Conference on Creativity and Cognition

June 2015

420 pages

ISBN:9781450335980

DOI:10.1145/2757226

Conference Chair:
Tom Maver
Glasgow School of Art
,
Program Chair:
Ellen Yi-Luen Do
Georgia Tech, USA/NUS, Singapore

Copyright © 2015 ACM.

Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]

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SIGCHI: ACM Special Interest Group on Computer-Human Interaction

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Association for Computing Machinery

New York, NY, United States

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Published: 22 June 2015

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C&C '15

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SIGCHI

C&C '15: Creativity and Cognition

June 22 - 25, 2015

Glasgow, United Kingdom

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C&C '15 Paper Acceptance Rate 23 of 88 submissions, 26%;

Overall Acceptance Rate 108 of 371 submissions, 29%

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https://doi.org/10.2196/43126
Cooney SRaghavan B(2022)Opening the Gate to Urban Repair: A Tool for Citizen-Led DesignProceedings of the ACM on Human-Computer Interaction10.1145/35129526:CSCW1(1-25)Online publication date: 7-Apr-2022
https://dl.acm.org/doi/10.1145/3512952
Westendorf LShaer OPollalis CVerish CNov OBall M(2018)Exploring Genetic Data Across Individuals: Design and Evaluation of a Novel Comparative Report ToolJournal of Medical Internet Research10.2196/1029720:9(e10297)Online publication date: 24-Sep-2018
https://doi.org/10.2196/10297
Frich JMose Biskjaer MDalsgaard PKoskinen ILim YCerratto-Pargman TChow KOdom W(2018)Twenty Years of Creativity Research in Human-Computer InteractionProceedings of the 2018 Designing Interactive Systems Conference10.1145/3196709.3196732(1235-1257)Online publication date: 8-Jun-2018
https://dl.acm.org/doi/10.1145/3196709.3196732
Ståhl ATholander JLaaksolahti JKosmack-Vaara EMival OSmyth MDalsgaard P(2017)Being, Bringing and BridgingProceedings of the 2017 Conference on Designing Interactive Systems10.1145/3064663.3064764(1309-1320)Online publication date: 10-Jun-2017
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Dolejsova MKera DStorni CKhot RClement IPavelka IKishor PMark GFussell SLampe Cschraefel mHourcade JAppert CWigdor D(2017)Digital Health & Self-experimentationProceedings of the 2017 CHI Conference Extended Abstracts on Human Factors in Computing Systems10.1145/3027063.3027071(510-517)Online publication date: 6-May-2017
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Dolejšová MKera DLee CPoltrock SBarkhuus LBorges MKellogg W(2017)Soylent Diet Self-ExperimentationProceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing10.1145/2998181.2998365(2112-2123)Online publication date: 25-Feb-2017
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Wolbring GDiep L(2016)The Discussions around Precision Genetic Engineering: Role of and Impact on Disabled PeopleLaws10.3390/laws50300375:3(37)Online publication date: 9-Sep-2016
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