Between 2006 and 2011, humanity accumulated 1,600 EB of data. As a result of this growth, there is now more data produced than available storage. This article explores the problem of “Big Data,” arguing for an epistemological approach as a possible solution to this ever-increasing challenge.

In discourses on digitization and the data economy, it is often claimed that data subjects shall beownersof their data. In this paper, we provide a problem diagnosis for such calls fordata ownership: a large variety of demands are discussed under this heading. It thus becomes challenging to specify what—if anything—unites them. We identify four conceptual dimensions of calls for data ownership and argue that these help to systematize and to compare different positions. In view of this pluralism of data ownership (...) claims, we introduce, spell out and defend a constructive interpretative proposal: claims for data ownership are charitably understood as attempts to call for theredistributionof material resources and the socio-culturalrecognitionof data subjects. We argue that as one consequence of this reading, it misses the point to reject claims for data ownership on the grounds that property in data does not exist. Instead, data ownership brings to attention a claim to renegotiate such aspects of thestatus quo. (shrink)

Background The aim of the study is to assess the knowledge, attitudes and practices among healthcare professionals in Barbados in relation to healthcare ethics and law in an attempt to assist in guiding their professional conduct and aid in curriculum development. Methods A self-administered structured questionnaire about knowledge of healthcare ethics, law and the role of an Ethics Committee in the healthcare system was devised, tested and distributed to all levels of staff at the Queen Elizabeth Hospital in Barbados (a (...) tertiary care teaching hospital) during April and May 2003. Results The paper analyses 159 responses from doctors and nurses comprising junior doctors, consultants, staff nurses and sisters-in-charge. The frequency with which the respondents encountered ethical or legal problems varied widely from 'daily' to 'yearly'. 52% of senior medical staff and 20% of senior nursing staff knew little of the law pertinent to their work. 11% of the doctors did not know the contents of the Hippocratic Oath whilst a quarter of nurses did not know the Nurses Code. Nuremberg Code and Helsinki Code were known only to a few individuals. 29% of doctors and 37% of nurses had no knowledge of an existing hospital ethics committee. Physicians had a stronger opinion than nurses regarding practice of ethics such as adherence to patients' wishes, confidentiality, paternalism, consent for procedures and treating violent/non-compliant patients (p = 0.01) Conclusion The study highlights the need to identify professionals in the workforce who appear to be indifferent to ethical and legal issues, to devise means to sensitize them to these issues and appropriately training them. (shrink)

Background Medical ethics deals with the ethical obligations of doctors to their patients, colleagues and society. The annual reports of Sri Lanka Medical Council indicate that the number of complaints against doctors has increased over the years. We aimed to assess the level of knowledge, attitude and practice regarding medical ethics among doctors in three teaching hospitals in Sri Lanka. Methods A hospital-based cross-sectional study was conducted among doctors using a pre-tested self-administered, anonymous questionnaire. Chi Squared test, and ANOVA test (...) were used to identify the significance of association between level of knowledge and selected factors. Results Most doctors had a poor level of knowledge on medical ethics, with postgraduate trainees showing significantly higher level of knowledge. The average knowledge on medical ethics among doctors was significantly different between the three hospitals. Over 95% had a favourable attitude towards gaining knowledge and advocated the need for training. The majority indicated awareness of unethical practices. 24.6% of respondents stated that they get a chaperone ‘sometimes’ during patient examination while 3.5% never do. The majority responded that they never accept gifts from pharmaceutical companies in recognition of their prescribing pattern. 12–41% of doctors participated in the study acknowledged that they ‘sometime’ engaged in unethical practices related to prescribing drugs, accepting gifts from pharmaceutical companies and when obtaining leave. Conclusion Most doctors had a poor level of knowledge of medical ethics. Postgraduate trainees had a higher level of knowledge than other doctors. The majority showed a favourable attitude towards gaining knowledge and the need of training. Regular in-service training on medical ethics for doctors would help to improve their knowledge on medical ethics, as well as attitudes and ethical conduct. (shrink)

In this paper, we discuss several problems with current Big data practices which, we claim, seriously erode the role of informed consent as it pertains to the use of personal information. To illustrate these problems, we consider how the notion of informed consent has been understood and operationalised in the ethical regulation of biomedical research (and medical practices, more broadly) and compare this with current Big data practices. We do so by first discussing three types of problems that can impede (...) informed consent with respect to Big data use. First, we discuss the transparency (or explanation) problem. Second, we discuss the re-repurposed data problem. Third, we discuss the meaningful alternatives problem. In the final section of the paper, we suggest some solutions to these problems. In particular, we propose that the use of personal data for commercial and administrative objectives could be subject to a ‘soft governance’ ethical regulation, akin to the way that all projects involving human participants (e.g., social science projects, human medical data and tissue use) are regulated in Australia through the Human Research Ethics Committees (HRECs). We also consider alternatives to the standard consent forms, and privacy policies, that could make use of some of the latest research focussed on the usability of pictorial legal contracts. (shrink)

The concept of ‘ownership’ is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from ‘ownership’ to ‘private property’ and conclude ‘the data (...) belongs to the patient’. I will argue here that private property is only one type of relevant relationship between people, communities and data. There are several reasons to doubt that conceptualising data as private property presents a compelling response to concerns about clinical data ownership. In particular I argue that clinical data are co-constructed, so a property account would fail to confer exclusive rights to the patient. A non-property account of ownership acknowledges that the data are ‘about the patient’, and therefore the patient has relevant interests, without jumping to the conclusion that the data ‘belongs to the patient’. On this broader account of ownership, the relevant harm is the severing of the connection between the patient and their data, and the solution is to re-engage and re-connect patients to the data research enterprise. (shrink)