Sharing personal genetic information: the impact of privacy concern and awareness of benefit
| Published date | 08 August 2016 |
| Date | 08 August 2016 |
| DOI | https://doi.org/10.1108/JICES-07-2015-0025 |
| Pages | 288-308 |
| Author | Don Heath,Ali Ardestani,Hamid Nemati |
| Subject Matter | Information & knowledge management,Information management & governance,Information & communications technology |
Sharing personal genetic
information: the impact of privacy
concern and awareness of benet
Don Heath
College of Business, University of Wisconsin – Oshkosh, Oshkosh,
Wisconsin, USA
Ali Ardestani
Division of General/GI, Department of Surgery,
Brigham and Women’s Hospital, Harvard University, Boston,
Massachusetts, USA, and
Hamid Nemati
Department of Information Systems and Operations Management,
The University of North Carolina – Greensboro, Greensboro, North
Carolina, USA
Abstract
Purpose – Human genomic research (HGR) demands very large pools of data to generate meaningful
inference. Yet, the sharing of one’s genetic data for research is a voluntary act. The collection of data
sufcient to fuel rapid advancement is contingent on individuals’ willingness to share. Privacy risks
associated with sharing this unique and intensely personal data are signicant. Genetic data are an
unambiguous identier. 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’ willingness to volunteer their private information in this high-risk/high-reward context.
Design/methodology/approach – The authors collect survey data from 273 respondents and use
structural equation modeling techniques to analyze responses.
Findings – The authors nd statistical support for our theorization. They nd that while heightened
awareness of the benets and risks of sharing correlates with increased privacy concerns, the net
impact is an increase in intention to share.
Social implications – The ndings suggest that prescriptive awareness might be an effective tool
with which policy-makers can gain the sufcient voluntary participation from individuals necessary to
drive large-scale medical research.
Originality/value – This study contributes a theoretically and empirically informed model which
demonstrates the impact of awareness and privacy concern on individuals’ willingness to share their
genetic data for large-scale HGR. It helps inform a rising class of data sufciency problems related to
large-scale medical research.
Keywords Public policy, TPB, Medicine, Human genomic research, Personal data processing
Paper type Research paper
1. Introduction
Issues surrounding information privacy are a growing concern to the public. The risks
inherent to sharing private information across online information systems are
The current issue and full text archive of this journal is available on Emerald Insight at:
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JICES
14,3
288
Received 22 July 2015
Revised 28 October 2015
11 November 2015
Accepted 11 November 2015
Journalof Information,
Communicationand Ethics in
Society
Vol.14 No. 3, 2016
pp.288-308
©Emerald Group Publishing Limited
1477-996X
DOI 10.1108/JICES-07-2015-0025
demonstrable, with spectacular data breaches frequently reported on by the media. For
example, the recent data breach at healthcare giant Anthem Inc. is believed to have
exposed the names, birthdays, medical IDs/social security numbers, street addresses,
email addresses, employment information and income data for 80 million US
subscribers – roughly 25 per cent of the population (Riley, 2015). The data breach at
Target Corporation data in November of 2013 spilled information on as many as 70
million customers. The stolen information includes names, addresses, email addresses
and credit and debit card information including the card verication value (McGrath,
2015). The public is increasingly aware of the potential risks posed by online
information systems to their digitized private information.
Human genomic research (HGR) is big data research which is largely reliant on the
willingness of individuals to volunteer their genetic information for digitization and
sharing with researchers. The information privacy risks associated with this act are
signicant, as the information being shared is uniquely permanently and personally
identifying. Any public linkage of a donor to their genetic sample is unambiguous,
potentially revealing that individual’s predisposition to certain diseases and behaviors,
paternity, heredity, intelligence, etc. Despite the inherent risk to donors, voluntary
donation of genetic information is the engine that facilitates large-scale genomic
research.
Discovery arising from HGR is elevating scientic understanding and driving
innovation in areas such as biotechnology, pharmacogenomics and personalized
medicine. HGR holds the potential to improve the human condition. Absent sufcient
voluntary donation, HGR risks potential data starvation. The aim of this study is to
illuminate the role of awareness and privacy concern as antecedents to willingness to
share personal genomic data with researchers, and to inform strategy to encourage
willingness to share. According to the most recent UNESCO Broadband Commission
report, there will be over 3.2 billion internet users by the end of 2015 (Development,
2015). This represents an 8 per cent increase over the prior year. They estimate over 50
per cent of the world’s population will be online by 2018. The steady rise in global
interconnectivity suggests the opportunity for large-scale research requiring voluntary
participation from individuals will only grow in importance, increasing researcher
interest in the delicate balance between information privacy concern, awareness, and
individuals’ willingness to share their personal data. This research helps inform a rising
class of data sufciency problems.
The aim of this study is to understand individuals’ willingness to volunteer their
private information for research in the high-risk/high-reward context of HGR. We argue
that publicity surrounding promising scientic breakthroughs, discoveries or
application of genetic research might heighten individual awareness regarding the
benet of volunteering one’s genetic data for research. Similarly, publicity regarding
risks to information privacy associated with the use of online information systems
might impact an individual’s attitude toward volunteering their own private
information across these systems. Thus, we consider the impact of awareness regarding
the benets of HGR and individual privacy concern on individuals’ willingness to share
their genomic information for research. Awareness and individual privacy concern each
have implication in the shaping an individual attitudes and motivations to share their
genetic information with researchers.
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Sharing
personal
genetic
information
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