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We examine the translation of the concept of privacy in the advent of digital communication technologies. We analyze emerging notions of informational privacy in public discourse and policymaking in the United States. Our analysis shows category change to be a dynamic process that is only in part about cognitive processes of similarity. Instead, conceptions of privacy were tied to institutional orders of worth. Those orders offered theories, analogies, and vocabularies that could be deployed to extrapolate the concept of privacy into new domains, make sense of new technologies, and to shape policy agendas.

Reusing existing data sets of health information for public health or medical research has much to recommend it. Much data repurposing in medical or public health research or practice involves information that has been stripped of individual identifiers but some does not. In some cases, there may have been consent to the reuse but in other cases consent may be absent and people may be entirely unaware of how the data about them are being used. Data sets are also being combined and may contain information with very different sources, consent histories, and individual identifiers. Much of the ethical and policy discussion about the permissibility of data reuse has centered on two questions: for identifiable data, the scope of the original consent and whether the reuse is permissible in light of that scope, and for de-identified data, whether there are unacceptable risks that the data will be reidentified in a manner that is harmful to any data subjects. Prioritizing these questions rests on a picture of the ethics of data use as primarily about respecting the choices of the data subject. We contend that this picture is mistaken; data repurposing, especially when data sets are combined, raises novel questions about the impacts of research on groups and their implications for individuals regarded as falling within these groups. These impacts suggest that the controversies about de-identification or reconsent for reuse are to some extent beside the point. Serious ethical questions are also raised by the inferences that may be drawn about individuals from the research and resulting risks of stigmatization. These risks may arise even when individuals were not part of the original data set being repurposed. Data reuse, repurposing, and recombination may have damaging effects on others not included within the original data sets. These issues of justice for individuals who might be regarded as indirect subjects of research are not even raised by approaches that consider only the implications for or agreement of the original data subject. This chapter argues that health information should be available for reuse, information should be available for use, but in a way that does not yield unexpected surprises, produce direct harm to individuals, or violate warranted trust.

The received wisdom underlying many guides to ethical research is that information is private, and research is consequently seen as a trespass on the private sphere. Privacy demands control; control requires consent; consent protects privacy. This is not wrong in every case, but it is over-generalised. The distorted perspective leads to some striking misinterpretations of the rights of research participants, and the duties of researchers. Privacy is not the same thing as data protection; consent is not adequate as a defence of privacy; seeking consent is not always required or appropriate. Beyond that, the misinterpretation can lead to conduct which is unethical, limiting the scope of research activity, obstructing the flow of information in a free society, and failing to recognise what researchers’ real duties are.

This paper will provide an overview of the contemporary surveillance environment in the age of Big Data and an insight into the complexities and overlap between security, bodily and informational surveillance as well as the subsequent impacts on privacy and democracy. These impacts include the ethical dilemmas facing librarians and information scientists as they endeavour to uphold principles of equality of access to information, and the support of intellectual freedom in private in an increasingly politicised informational environment. If we accept that privacy is integral to the notion of learning, free thought and intellectual exploration and a crucial element in the separation of the state and the individual in democratic society, then the emergence of the data age and the all-encompassing surveillance and exposure of once private acts will undoubtedly lead to the reimagining of the social and political elements of society.

A great concern regarding the use of data science in any field is privacy. Adequately protecting individuals from the negative effects of maliciously shared personal identifying information is essential. It is however, also important to understand the positive role that protected and shared information can play. This chapter provides a basic understanding of how the concept of privacy has developed in the United States (US) and suggests that continued development of that understanding and the protections provided will occur.

Legalists and social scientists have not been able to explain the expansion of gay rights in a conservative age because they refuse to respect the special qualities of judicial decision making. These qualities require the Supreme Court to look simultaneously at the past, present, and future, and, most importantly, to determine questions of individual rights through a consideration of how citizens are to live under a continuing rights regime. Unless scholars understand how and why Supreme Court decision making differs from that of more directly politically accountable institutions we can expect no greater success in explaining or predicting individual rights in the future.

The chapter deliberates on research ethics and the unanticipated side effects that technological developments have brought in the past decades. It looks at data protection and privacy through the prism of ethics and focuses on the need for safeguarding the fundamental rights of the research participants in the new digital era. Acknowledging the benefits of data analytics for boosting scientific process, the chapter reflects on the main principles and specific research derogations, introduced by the EU General Data Protection Regulation. Further on, it discusses some of the most pressing ethics concerns, related to the use, reuse, and misuse of data; the distinction between publicly available and open data; ethics challenges in online recruitment of research participants; and the potential bias and representativeness problems of Big Data research. The chapter underscores that all challenges should be properly addressed at the outset of research design. Highlighting the power asymmetries between Big Data studies and individuals’ rights to data protection, human dignity, and respect for private and family life, the chapter argues that anonymization may be reasonable, yet not the ultimate ethics solution. It asserts that while anonymization techniques may protect individual data protection rights, the former may not be sufficient to prevent discrimination and stigmatization of entire groups of populations. Finally, the chapter suggests some approaches for ensuring ethics compliance in the digital era.

With the increasing use of the Internet and social media, governments worldwide are adopting digital technologies and innovative strategies to communicate and engage with their citizens. Public sector agencies, especially at the local level, have been adopting emerging technologies such as the Internet of Things, artificial Intelligence, and blockchain and they are increasingly leveraging big data analytics to improve their decision-making and organizational performance. These rapid innovations pose important questions about, and concerns for, the privacy and security of the citizens accessing government information and services online. This chapter explores these issues, discusses the role of privacy policies in addressing such concerns, and highlights the need for ethical privacy policies to restore the trust and confidence of citizen users of government websites.