The Regulation of Genetic Testing and the Protection of Genetic and Medical Information in Singapore

2011 ◽  
pp. 1853-1873
Author(s):  
Terry Kaan
Keyword(s):  
Genetic Testing ◽  
Biomedical Research ◽  
Medical Information ◽  
Social Issues ◽  
Personal Information ◽  
Insurance Industry ◽  
Special Treatment ◽  
Privacy Concerns ◽  
Genetic Exceptionalism ◽  
The Impact

In the decades since its independence in 1965, the transformation of Singapore’s economy and its transition to a relatively developed economy has also in like manner transformed its health care system, and of the demands made of it. The emergence and availability of new medical technologies has put into sharp focus many novel legal, ethical as well as social issues. This chapter looks at how Singapore has attempted to respond to issues thrown up by genetic testing and screening technologies. A particular focus of this chapter will be the tension between privacy concerns, and the imperatives of access for biomedical research, given that biomedical research has been championed by the Singapore government as one of the future leading sectors of the economy of Singapore. This chapter also examines Singapore’s approach to the question of “genetic exceptionalism:” Does genetic information possess special qualities or attributes that remove it from the realm of ordinary personal information, and which thereby demands special treatment and protection? In this context, the impact of the doctrine of genetic exceptionalism on industry (in this case the insurance industry) is examined.

The Regulation of Genetic Testing and the Protection of Genetic and Medical Information in Singapore

2011 ◽  
pp. 199-219
Author(s):  
Terry Kaan
Keyword(s):  
Genetic Testing ◽  
Biomedical Research ◽  
Medical Information ◽  
Social Issues ◽  
Personal Information ◽  
Insurance Industry ◽  
Special Treatment ◽  
Privacy Concerns ◽  
Genetic Exceptionalism ◽  
The Impact

In the decades since its independence in 1965, the transformation of Singapore’s economy and its transition to a relatively developed economy has also in like manner transformed its health care system, and of the demands made of it. The emergence and availability of new medical technologies has put into sharp focus many novel legal, ethical as well as social issues. This chapter looks at how Singapore has attempted to respond to issues thrown up by genetic testing and screening technologies. A particular focus of this chapter will be the tension between privacy concerns, and the imperatives of access for biomedical research, given that biomedical research has been championed by the Singapore government as one of the future leading sectors of the economy of Singapore. This chapter also examines Singapore’s approach to the question of “genetic exceptionalism:” Does genetic information possess special qualities or attributes that remove it from the realm of ordinary personal information, and which thereby demands special treatment and protection? In this context, the impact of the doctrine of genetic exceptionalism on industry (in this case the insurance industry) is examined.

Disability Income Insurance: The Private Market and the Impact of Genetic Testing

2007 ◽  
Vol 35 (S2) ◽  
pp. 40-46 ◽  
Author(s):  
David J. Christianson
Keyword(s):  
Genetic Testing ◽  
Insurance Industry ◽  
Private Insurance ◽  
Disability Insurance ◽  
Insurance Market ◽  
Income Insurance ◽  
Potential Impact ◽  
Disability Income ◽  
The Individual ◽  
The Impact

This article discusses the disability insurance industry in order to provide context regarding the potential impact of genetic testing on disability insurance. It describes disability income insurance, exploring both the protection it offers and its main contract provisions. It goes on to describe the private insurance market and the differences between group and individual insurance, and concludes with implications of genetic testing with respect to the private disability insurance market. The individual disability income insurance market is theoretically of great interest as a matter of public policy since there is potential for unfair discrimination through genetic testing although this remains very unlikely as a matter of practice, however.It is more likely that a person will become disabled than die before age 65. The loss of income during a disability can be quite devastating. In contrast to the high risk and high impact of disability are the realities of the disability market.

Why people need privacy? The role of privacy fatigue in app users' intention to disclose privacy: based on personality traits

2020 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jie Tang ◽  
Umair Akram ◽  
Wenjing Shi
Keyword(s):  
Personality Traits ◽  
Information Disclosure ◽  
Personal Information ◽  
Mobile Apps ◽  
Equation Modeling ◽  
Content Type ◽  
Privacy Concerns ◽  
Positive Effects ◽  
Novel Concept ◽  
The Impact

PurposeMobile Applications (App) privacy has become a prominent social problem. Compared with privacy concerns, this study examines a relatively novel concept of privacy fatigue and explores its effect on the users’ intention to disclose their personal information via mobile Apps. In addition, the personality traits are proposed as antecedents that will induce the personal perception of privacy fatigue and privacy concerns differently.Design/methodology/approachData were collected from 426 respondents. Structure equation modeling was used to test the hypotheses.FindingsThe findings describe that App users’ intention toward personal information disclosure is determined by privacy fatigue and privacy concerns, but the former has a greater impact. With minor exceptions, the two factors are also influenced by different personality traits. Specifically, neuroticism has positive effects on privacy fatigue, but agreeableness and extraversion have presented the opposite results on the two variables.Practical implicationsThis research is very scarce to examine the joint effects of privacy fatigue, privacy concerns and personality traits on App users’ disclosing intention. In doing so, these results will be of benefit to App providers and platform managers and can be the basis for a variety of follow-up studies.Originality/valueWhile previous research just focuses on privacy concerns, this study explores the critical roles of privacy fatigue and opens up a new avenue of emotion-attitude analysis that can further increase the specificity and richness of users’ privacy research. Additionally, implications for personality traits as antecedents in the impact of App users’ privacy emotions and attitudes are discussed.

scholarly journals Investigating the Personalization–Privacy Paradox in Internet of Things (IoT) Based on Dual-Factor Theory: Moderating Effects of Type of IoT Service and User Value

2021 ◽  
Vol 13 (19) ◽  
pp. 10679
Author(s):  
Ae-Ri Lee
Keyword(s):  
Internet Of Things ◽  
Personal Information ◽  
Intention To Use ◽  
Moderating Effects ◽  
Web Based ◽  
Privacy Concerns ◽  
Privacy Leakage ◽  
User Value ◽  
The Impact ◽  
The Relationship

Despite people’s concerns over privacy leakage in the Internet of Things (IoT), the needs for personalized IoT services are increasing, creating a conflicting phenomenon viewed as the personalization–privacy (P–P) paradox. This study proposes a research model that utilizes dual-factor theory to investigate the P–P paradox in IoT. It aims to analyze the impact of the dual factor—personalization and privacy concerns related to IoT services—on the intention to use IoT. Further, the model includes four-dimensional motivated innovativeness and previous privacy-invasion experience as key antecedents of the dual factor. Particularly, this study examines the moderating effects of the type of IoT service and user value on the relationship between dual factor and usage intention. Data were collected using a web-based survey. The results showed that personalization had a significant impact on the intention to use IoT, whereas privacy concerns did not. The effects of all antecedents except social innovativeness were significant. The P–P paradox phenomenon appeared differently depending on the type of IoT service and user value. This study contributes to gaining a better understanding of the factors that influence the increase in IoT usage in terms of both protecting and appropriately using personal information for IoT services.

The Impact of Genetic Testing and Genetic Information on Ethical, Legal and Social Issues in North America

2013 ◽  
pp. 1317-1333
Author(s):  
Natalia Serenko
Keyword(s):  
Genetic Testing ◽  
North America ◽  
Information And Communication Technologies ◽  
Genetic Information ◽  
Social Issues ◽  
Psychological Impact ◽  
Communication Technologies ◽  
Individual Autonomy ◽  
Information And Communication ◽  
The Impact

This chapter discusses the impact of genetic testing and genetic information. It proposes a framework that facilitates a critical analysis of the ethical, legal, and social issues of genetic testing. The ethical effects include privacy infringement, genetic discrimination, misleading advertisement, psychological impact, and individual autonomy. The legal impacts embrace consistent terminology, referral guidelines, patent wars, and new legislations. The social effects pertain to inequality, higher insurance fees, tax burden, and fear of new eugenics. Information and communication technologies dramatically augment the effect of genetic testing on these outcomes. This chapter argues that information and communication technologies and rapid advances in genetics challenge the existing legislation systems in North America. Therefore, policy-makers need to address the tension between the potential benefits and harms of genetic testing and genetic information.

scholarly journals Patients’ Willingness to Share Information in Online Patient Communities: Questionnaire Study

10.2196/16546 ◽  
2020 ◽  
Vol 22 (4) ◽  
pp. e16546
Author(s):  
Panpan Zhu ◽  
Jiang Shen ◽  
Man Xu
Keyword(s):  
Information Sharing ◽  
Disease Severity ◽  
Medical Information ◽  
Structural Equations ◽  
Information Support ◽  
Online Information ◽  
Privacy Concerns ◽  
Information Sensitivity ◽  
The Impact ◽  
Share Information

Background Online patient communities provide new channels for users to access and share medical information. In-depth study of users’ willingness to share information in online patient communities is of great significance for improving the level of information sharing among the patient community and the long-term development of communities. Objective The aim of this study was to build a model of factors affecting patients’ willingness to share medical information from the perspective of both positive and negative utilities. Specifically, we aimed to determine the influence of online information support and privacy concerns, as well as the moderating effect of disease severity and information sensitivity of different patients on their willingness to share. Methods Data from 490 users with experience in online patient communities were collected through a questionnaire survey, and structural equations were applied to empirically verify the model hypotheses. Results Privacy concerns negatively affected the patients’ willingness to share information (P<.001), whereas online information support positively affected patients’ willingness to share information (P<.001), and information sensitivity negatively moderated the impact of online information support on sharing willingness (P=.01). Disease severity positively moderated the impact of privacy concerns on sharing willingness (P=.05). However, the hypotheses that information sensitivity is a negative moderator and disease severity is a positive moderator of the impact of privacy concerns on sharing willingness could not be supported. Conclusions To improve the level of user information sharing, the online patient community should design a safe user registration process, ensure the confidentiality of information, reduce the privacy concerns of users, and accurately identify the information needs of patients to provide personalized support services.

scholarly journals Human Genetics Society of Australasia Position Statement: Genetic Testing and Personal Insurance Products in Australia

2018 ◽  
Vol 21 (6) ◽  
pp. 533-537 ◽  
Author(s):  
Ainsley J. Newson ◽  
Sam Ayres ◽  
Jackie Boyle ◽  
Michael T. Gabbett ◽  
Amy Nisselle
Keyword(s):  
Genetic Testing ◽  
Professional Education ◽  
Human Genetics ◽  
Insurance Industry ◽  
Active Role ◽  
Position Statement ◽  
Personal Genome ◽  
Genetic Test Results ◽  
The Impact ◽  
Personal Insurance

The expansion of genetic and genomic testing in clinical practice and research and the growing market for at home personal genome testing has led to increased awareness about the impact of this form of testing on insurance. Genetic or genomic information can be requested by providers of mutually rated insurance products, who may then use it when setting premiums or determining eligibility for cover under a particular product. Australian insurers are subject to relevant legislation and an industry standard that was updated in late 2016. In 2018, the Human Genetics Society of Australasia updated its position statement on genetic testing and life insurance to account for these changes and to increase the scope of the statement to include a wider scope of insurance products that are not rated according to community risk, such as life, critical care, and income protection products. Recommendations include that providers of professional education involving genetics should include ethical, legal, and social aspects of insurance discrimination in their curricula; that the Australian government take a more active role in regulating use of genetic information in personal insurance, including enacting a moratorium on use of genetic test results; that information obtained in the course of a research project be excluded; and that there is improved engagement between the insurance industry, regulators, and the genetics profession.

The Impact of Genetic Testing and Genetic Information on Ethical, Legal and Social Issues in North America

2012 ◽  
pp. 408-424
Author(s):  
Natalia Serenko
Keyword(s):  
Genetic Testing ◽  
North America ◽  
Information And Communication Technologies ◽  
Genetic Information ◽  
Social Issues ◽  
Psychological Impact ◽  
Communication Technologies ◽  
Individual Autonomy ◽  
Information And Communication ◽  
The Impact

This chapter discusses the impact of genetic testing and genetic information. It proposes a framework that facilitates a critical analysis of the ethical, legal, and social issues of genetic testing. The ethical effects include privacy infringement, genetic discrimination, misleading advertisement, psychological impact, and individual autonomy. The legal impacts embrace consistent terminology, referral guidelines, patent wars, and new legislations. The social effects pertain to inequality, higher insurance fees, tax burden, and fear of new eugenics. Information and communication technologies dramatically augment the effect of genetic testing on these outcomes. This chapter argues that information and communication technologies and rapid advances in genetics challenge the existing legislation systems in North America. Therefore, policy-makers need to address the tension between the potential benefits and harms of genetic testing and genetic information.

Social media cultivating perceptions of privacy: A 5-year analysis of privacy attitudes and self-disclosure behaviors among Facebook users

2016 ◽  
Vol 20 (1) ◽  
pp. 141-161 ◽  
Author(s):  
Mina Tsay-Vogel ◽  
James Shanahan ◽  
Nancy Signorielli
Keyword(s):  
Social Media ◽  
Information Exchange ◽  
Risk Perceptions ◽  
Personal Information ◽  
Negative Relationship ◽  
Self Disclosure ◽  
Privacy Concerns ◽  
Facebook Use ◽  
The Impact

In light of the omnipresence of personal information exchange in the virtual world, this study examines the effects of Facebook use on privacy perceptions and self-disclosure behaviors across a 5-year period from 2010 to 2015. Findings at the global level support the socializing role of Facebook in cultivating more relaxed privacy attitudes, subsequently increasing self-disclosure in both offline and online contexts. However, longitudinal trends indicate that while risk perceptions increased for heavy users, they remained stable for light users. Furthermore, the negative relationship between privacy concerns and self-disclosure weakened across time. Implications for the application of cultivation theory to a contemporary social media context and the year-to-year changes in the impact of Facebook use on privacy attitudes and self-disclosure are discussed.

Information disclosure willingness and mobile cloud computing collaboration apps: the impact of security and assurance mechanisms

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Hamid Reza Nikkhah ◽  
Rajiv Sabherwal
Keyword(s):  
Cloud Computing ◽  
Information Disclosure ◽  
Mobile Cloud Computing ◽  
Personal Information ◽  
Security And Privacy ◽  
Mobile Cloud ◽  
Content Type ◽  
Privacy Concerns ◽  
Security Assurance ◽  
The Impact

PurposeIn this research, the authors focus on mobile cloud computing (MCC) collaboration apps that are multiplatform and send the users’ data to the cloud. Despite their benefits, MCC collaboration apps raise privacy concerns, as the users’ information is sent to the cloud where users lack direct control. This study aims to investigate why users disclose information to MCC apps despite privacy concerns and examine the effect of security and assurance mechanisms (i.e. privacy policies and ISO/IEC 27018 certification) on users’ perceptions and information disclosure. Based on three surveys conducted in 2016 (n = 515), 2017 (n = 505) and 2018 (n = 543), this study finds mixed results regarding the relationships among security, assurance mechanisms, utilitarian benefits and information disclosure.Design/methodology/approachThis study conducted three scenario-based surveys in the USA in 2016 (n = 515), 2017 (n = 505) and 2018 (n = 543).FindingsThis study finds mixed results of relationships among security, assurance mechanisms, utilitarian benefit and information disclosure.Originality/valueWith proliferation of MCC apps, the investigation of how users make privacy decision to disclose personal information to these apps is sparse. This study, for the first time, investigates whether the signals of assurance mechanism decrease users’ privacy concerns. This study also examines the interplay between security and privacy within information disclosure behavior. Finally, this study was conducted in 3 years to enhance the generalizability and robustness of findings.

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