Privacy

Kaufman et al. Public Opinion about the Importance of Privacy in Biobank Research. Am J Hum Genet (2009) Published online: October 29, 2009. doi:10.1016/j.ajhg.2009.10.002

Abstract: Concerns about privacy may deter people from participating in genetic research. Recruitment and retention of biobank participants requires understanding the nature and magnitude of these concerns. Potential participants in a proposed biobank were asked about their willingness to participate, their privacy concerns, informed consent, and data sharing. A representative survey of 4659 U.S. adults was conducted. Ninety percent of respondents would be concerned about privacy, 56% would be concerned about researchers having their information, and 37% would worry that study data could be used against them. However, 60% would participate in the biobank if asked. Nearly half (48%) would prefer to provide consent once for all research approved by an oversight panel, whereas 42% would prefer to provide consent for each project separately. Although 92% would allow academic researchers to use study data, 80% and 75%, respectively, would grant access to government and industry researchers. Concern about privacy was related to lower willingness to participate only when respondents were told that they would receive $50 for participation and would not receive individual research results back. Among respondents who were told that they would receive $200 or individual research results, privacy concerns were not related to willingness. Survey respondents valued both privacy and participation in biomedical research. Despite pervasive privacy concerns, 60% would participate in a biobank. Assuring research participants that their privacy will be protected to the best of researchers’ abilities may increase participants’ acceptance of consent for broad research uses of biobank data by a wide range of researchers.

Maler. The design of everyday identity. Online Information Review (2009) vol. 33 (3) pp. 443-457 http://dx.doi.org/10.1108/14684520910969899

Abstract:
Purpose – The purpose of this paper is to examine trends towards “user centricity” in web-based digital identity technologies, and analyse these technologies in light of universal principles of human-centred design and usability in order to recommend future direction.
Design/methodology/approach – Web users’ habits and relevant usability research are analysed and requirements for identity-enabled online interactions are proposed given this context. Modern identity technologies of various types are then studied to assess their ability to satisfy the requirement.
Findings – The results of these analyses point towards a possible explanation for the lack of wide adoption of today’s user-centric solution.
Research limitations/implications – Based on the findings of the analyses, practical implications and recommendations are offered.
Originality/value – The paper’s discussion of usability factors to consider and its set of final recommendations in light of these factors are new work that may be useful to identity management developers and deployers looking to achieve better user adoption, as well as to researchers and innovators in the fields of social networking and vendor relationship management.