{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,8,2]],"date-time":"2025-08-02T17:23:37Z","timestamp":1754155417283,"version":"3.41.2"},"reference-count":36,"publisher":"Emerald","issue":"3","license":[{"start":{"date-parts":[[2016,8,8]],"date-time":"2016-08-08T00:00:00Z","timestamp":1470614400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.emerald.com\/insight\/site-policies"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JICES"],"published-print":{"date-parts":[[2016,8,8]]},"abstract":"<jats:sec>\n<jats:title content-type=\"abstract-subheading\">Purpose<\/jats:title>\n<jats:p>Human genomic research (HGR) demands very large pools of data to generate meaningful inference. Yet, the sharing of one\u2019s genetic data for research is a voluntary act. The collection of data sufficient to fuel rapid advancement is contingent on individuals\u2019 willingness to share. Privacy risks associated with sharing this unique and intensely personal data are significant. Genetic data are an unambiguous identifier. Public linkage of donor to their genetic data could reveal predisposition to diseases, behaviors, paternity, heredity, intelligence, etc. The purpose of this paper is to understand individuals\u2019 willingness to volunteer their private information in this high-risk\/high-reward context.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title content-type=\"abstract-subheading\">Design\/methodology\/approach<\/jats:title>\n<jats:p>The authors collect survey data from 273 respondents and use structural equation modeling techniques to analyze responses.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title content-type=\"abstract-subheading\">Findings<\/jats:title>\n<jats:p>The authors find statistical support for our theorization. They find that while heightened awareness of the benefits and risks of sharing correlates with increased privacy concerns, the net impact is an increase in intention to share.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title content-type=\"abstract-subheading\">Social implications<\/jats:title>\n<jats:p>The findings suggest that prescriptive awareness might be an effective tool with which policy-makers can gain the sufficient voluntary participation from individuals necessary to drive large-scale medical research.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title content-type=\"abstract-subheading\">Originality\/value<\/jats:title>\n<jats:p>This study contributes a theoretically and empirically informed model which demonstrates the impact of awareness and privacy concern on individuals\u2019 willingness to share their genetic data for large-scale HGR. It helps inform a rising class of data sufficiency problems related to large-scale medical research.<\/jats:p>\n<\/jats:sec>","DOI":"10.1108\/jices-07-2015-0025","type":"journal-article","created":{"date-parts":[[2016,8,2]],"date-time":"2016-08-02T06:16:52Z","timestamp":1470118612000},"page":"288-308","source":"Crossref","is-referenced-by-count":5,"title":["Sharing personal genetic information: the impact of privacy concern and awareness of benefit"],"prefix":"10.1108","volume":"14","author":[{"given":"Don","family":"Heath","sequence":"first","affiliation":[]},{"given":"Ali","family":"Ardestani","sequence":"additional","affiliation":[]},{"given":"Hamid","family":"Nemati","sequence":"additional","affiliation":[]}],"member":"140","reference":[{"year":"2011","key":"key2020121320395663800_ref001","article-title":"Education level as a technology adoption moderator in computer research and development"},{"issue":"2","key":"key2020121320395663800_ref002","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1016\/0749-5978(91)90020-T","article-title":"The theory of planned behavior","volume":"50","year":"1991","journal-title":"Organizational Behavior and Human Decision Processes"},{"issue":"4","key":"key2020121320395663800_ref003","first-page":"665","article-title":"Perceived behavioral control, self-efficacy, locust of control and the theory of planned behavior","volume":"32","year":"2002","journal-title":"Journal of Applied Psychology"},{"issue":"1","key":"key2020121320395663800_ref004","doi-asserted-by":"crossref","first-page":"221","DOI":"10.1037\/0021-9010.91.1.221","article-title":"Information privacy in organizations: empowering creative and extrarole performance","volume":"91","year":"2006","journal-title":"Journal of Applied Psychology"},{"issue":"3","key":"key2020121320395663800_ref005","doi-asserted-by":"crossref","first-page":"469","DOI":"10.1287\/isre.1100.0335","article-title":"The digitization of healthcare : boundary risks, emotion and consumer willingness to disclose personal health information","volume":"22","year":"2011","journal-title":"Information Systems Research"},{"issue":"2","key":"key2020121320395663800_ref006","doi-asserted-by":"crossref","first-page":"339","DOI":"10.2307\/20650295","article-title":"Adoption of electronic health records in the presence of privacy concerns : the elaboration likelihood model and individual persuasion","volume":"33","year":"2009","journal-title":"MIS Quarterly"},{"issue":"4","key":"key2020121320395663800_ref007","doi-asserted-by":"crossref","first-page":"1017","DOI":"10.2307\/41409971","article-title":"Privacy in the digital age: a review of information privacy research in information systems","volume":"35","year":"2011","journal-title":"MIS Quarterly"},{"issue":"3","key":"key2020121320395663800_ref008","doi-asserted-by":"crossref","first-page":"340","DOI":"10.1177\/1948550612455931","article-title":"Misplaced confidences, privacy and the control paradox","volume":"4","year":"2013","journal-title":"Social Psychology and Personality Science"},{"article-title":"The Partial Least Square Approach to Structural Equation Modeling","volume-title":"Modern Methods for Business Research","year":"1998","key":"key2020121320395663800_ref009"},{"edition":"(2nd edition)","volume-title":"Statistical Power Analysis for the Behavioral Sciences","year":"1988","key":"key2020121320395663800_ref036"},{"issue":"15","key":"key2020121320395663800_ref010","first-page":"1429","article-title":"Extending the theory of planned behavior: a review and avenues for further research","volume":"28","year":"1998","journal-title":"Journal of Applied Psychology"},{"volume-title":"The State of Broadband","year":"2015","author":"Development, B.C. for D.","key":"key2020121320395663800_ref011"},{"issue":"7","key":"key2020121320395663800_ref012","doi-asserted-by":"crossref","first-page":"386","DOI":"10.17705\/1jais.00133","article-title":"The centrality of awareness in the formation of user behavioral intention toward protective information technologies","volume":"8","year":"2007","journal-title":"Journal of the Association for Information Systems"},{"volume-title":"Belief, Attitude, Intention and Behavior: An Introduction to Theory and Research","year":"1975","key":"key2020121320395663800_ref013"},{"volume-title":"Empirical Investigation of the Relationship of Privacy, Security and Trust with Behavioral Intention to Transact in E-commerce","year":"2006","key":"key2020121320395663800_ref014"},{"issue":"1","key":"key2020121320395663800_ref035","first-page":"45","article-title":"Consumer trust in an internet store","volume":"1","year":"2000","journal-title":"Information Technology and Management"},{"key":"key2020121320395663800_ref015","doi-asserted-by":"crossref","unstructured":"Lowry, P.B., Cao, J. and Everard, A. (2011), \u201cPrivacy concerns versus desire for interpersonal awareness in driving the use of self-disclosure technologies: the case of instant messaging in two cultures\u201d, Journal of Management Information Systems, Vol. 27 No. 4, pp. 163-200, available at: http:\/\/mesharpe.metapress.com\/openurl.asp?genre=article&id=doi:10.2753\/MIS0742-1222270406 (accessed 2 March 2012).","DOI":"10.2753\/MIS0742-1222270406"},{"key":"key2020121320395663800_ref017","unstructured":"McGrath, M. (2015), \u201cTarget data breach spilled info on as many as 70 million customers\u201d, Forbes, available at: www.forbes.com\/sites\/maggiemcgrath\/2014\/01\/10\/target-data-breach-spilled-info-on-as-many-as-70-million-customers\/ (accessed 2 September 2015)."},{"issue":"4","key":"key2020121320395663800_ref016","doi-asserted-by":"crossref","first-page":"336","DOI":"10.1287\/isre.1040.0032","article-title":"Internet Users\u2019 Information Privacy Concerns (IUIPC): the construct, the scale and a causal model","volume":"15","year":"2004","journal-title":"Information Systems Research"},{"issue":"2","key":"key2020121320395663800_ref018","doi-asserted-by":"crossref","first-page":"375","DOI":"10.1111\/j.1744-6570.2000.tb00206.x","article-title":"Age differences in technology adoption decisions: implications for a changing workforce","volume":"53","year":"2000","journal-title":"Personnel Psychology"},{"issue":"1","key":"key2020121320395663800_ref019","doi-asserted-by":"crossref","first-page":"69","DOI":"10.1109\/TEM.2004.839967","article-title":"Gender and age differences in employee decisions about new technology: an extension to the theory of planned behavior","volume":"52","year":"2005","journal-title":"IEEE Tansactions on Management"},{"issue":"6","key":"key2020121320395663800_ref020","doi-asserted-by":"crossref","first-page":"393","DOI":"10.1037\/h0063098","article-title":"An approach to the study of communicative acts","volume":"60","year":"1953","journal-title":"Pyschology Review"},{"issue":"4","key":"key2020121320395663800_ref021","doi-asserted-by":"crossref","first-page":"977","DOI":"10.2307\/41409969","article-title":"State of the information privacy literature: where are we now and where should we go","volume":"35","year":"2011","journal-title":"Management Information Systems Quarterly"},{"issue":"2","key":"key2020121320395663800_ref022","doi-asserted-by":"crossref","first-page":"127","DOI":"10.1111\/j.2044-8309.1995.tb01053.x","article-title":"Extending the theory of planned behaviour: the role of personal norm","volume":"34","year":"1995","journal-title":"British Journal of Social Psychology"},{"issue":"2","key":"key2020121320395663800_ref023","doi-asserted-by":"crossref","first-page":"328","DOI":"10.1037\/0033-2909.93.2.328","article-title":"Age-related differences in work attitude and behavior: a review of conceptual analysis","volume":"93","year":"1983","journal-title":"Psychological Bulletin"},{"key":"key2020121320395663800_ref024","doi-asserted-by":"crossref","unstructured":"Riley, C. (2015), \u201cInsurance giant anthem hit by massive data breach\u201d, CNN Money, available at: http:\/\/money.cnn.com\/2015\/02\/04\/technology\/anthem-insurance-hack-data-security\/ (accessed 2 September 2015).","DOI":"10.1016\/S1361-3723(15)30001-4"},{"edition":"4th edn.","volume-title":"Diffusion of Innovation","year":"1995","key":"key2020121320395663800_ref025"},{"key":"key2020121320395663800_ref026","first-page":"1","article-title":"Increasing public awareness of direct-to-consumer genetic tests: health care access, internet use and population density correlates","year":"2012","journal-title":"Journal of Cancer Epidemiology,"},{"issue":"6","key":"key2020121320395663800_ref027","doi-asserted-by":"crossref","first-page":"431","DOI":"10.1007\/BF00881451","article-title":"Softlifting: a model of motivating factors","volume":"13","year":"1994","journal-title":"Journal of Business Ethics"},{"issue":"2","key":"key2020121320395663800_ref028","doi-asserted-by":"crossref","first-page":"167","DOI":"10.2307\/249477","article-title":"Information privacy: measuring individuals\u2019 concerns about organizational practices","volume":"20","year":"1996","journal-title":"MIS Quarterly"},{"issue":"4","key":"key2020121320395663800_ref029","doi-asserted-by":"crossref","first-page":"989","DOI":"10.2307\/41409970","article-title":"Information privacy research: an interdisciplinary review","volume":"35","year":"2011","journal-title":"MIS Quarterly"},{"issue":"3","key":"key2020121320395663800_ref030","doi-asserted-by":"crossref","first-page":"503","DOI":"10.2307\/25750689","article-title":"User Participation in information systems security risk management","volume":"34","year":"2010","journal-title":"MIS Quarterly"},{"issue":"3","key":"key2020121320395663800_ref031","doi-asserted-by":"crossref","first-page":"459","DOI":"10.1037\/0021-9010.68.3.459","article-title":"A field experiment comparing information prvacy values, beliefs and attitudes across several types of organizations","volume":"68","year":"1983","journal-title":"Jpournal of Applied Psychology"},{"issue":"3","key":"key2020121320395663800_ref032","doi-asserted-by":"crossref","first-page":"257","DOI":"10.2307\/249666","article-title":"Desktop videoconferencing: experiences of complete users wary users and non-users","volume":"22","year":"1998","journal-title":"Management Information Systems Quarterly"},{"volume-title":"Privacy and Freedom","year":"1967","key":"key2020121320395663800_ref033"},{"issue":"4","key":"key2020121320395663800_ref034","doi-asserted-by":"crossref","first-page":"352","DOI":"10.1108\/09593840710839798","article-title":"The effects of gender and age on new technology implementation in a developing country: testing the theory of planned behavior (TPB)","volume":"20","year":"2007","journal-title":"Information, Technology and People"}],"container-title":["Journal of Information, Communication and Ethics in Society"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/www.emeraldinsight.com\/doi\/full-xml\/10.1108\/JICES-07-2015-0025","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.emerald.com\/insight\/content\/doi\/10.1108\/JICES-07-2015-0025\/full\/xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.emerald.com\/insight\/content\/doi\/10.1108\/JICES-07-2015-0025\/full\/html","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,7,24]],"date-time":"2025-07-24T21:38:34Z","timestamp":1753393114000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.emerald.com\/jices\/article\/14\/3\/288-308\/213003"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,8,8]]},"references-count":36,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2016,8,8]]}},"alternative-id":["10.1108\/JICES-07-2015-0025"],"URL":"https:\/\/doi.org\/10.1108\/jices-07-2015-0025","relation":{},"ISSN":["1477-996X"],"issn-type":[{"type":"print","value":"1477-996X"}],"subject":[],"published":{"date-parts":[[2016,8,8]]}}}