This paper provides a systematic literature review, analysis and discussion of methods that are proposed to practise ethics in research and innovation. Ethical considerations concerning the impacts of R&I are increasingly important, due to the quickening pace of technological innovation and the ubiquitous use of the outcomes of R&I processes in society. For this reason, several methods for practising ethics have been developed in different fields of R&I. The paper first of all presents a systematic search of academic sources that (...) present and discuss such methods. Secondly, it provides a categorisation of these methods according to three main kinds: ex ante methods, dealing with emerging technologies, intra methods, dealing with technology design, and ex post methods, dealing with ethical analysis of existing technologies. Thirdly, it discusses the methods by considering problems in the way they deal with the uncertainty of technological change, ethical technology design, the identification, analysis and resolving of ethical impacts of technologies and stakeholder participation. The results and discussion of our literature review are valuable for gaining an overview of the state of the art and serve as an outline of a future research agenda of methods for practising ethics in R&I. (shrink)

The authors use the term “principlism” to refer to the practice of using “principles” to replace both moral theory and particular moral rules and ideals in dealing with the moral problems that arise in medical practice. The authors argue that these “principles” do not function as claimed, and that their use is misleading both practically and theoretically. The “principles” are in fact not guides to action, but rather they are merely names for a collection of sometimes superficially related matters for (...) consideration when dealing with a moral problem. The “principles” lack any systematic relationship to each other, and they often conflict with each other. These conflicts are unresolvable, since there is no unified moral theory from which they are all derived. For comparison the authors sketch the advantages of using a unified moral theory. (shrink)

Electronic information is a vital but complex component in the modern health care system, fueling ongoing efforts to develop a universal electronic health record infrastructure. This innovation creates a substantial tension between two desirable values: the increased quality and utility of patient medical records and the protection of the privacy of the information they contain. This article discusses related U.S. legislation, policy, and law—including the Health Insurance Portability and Accountability Act of 1996. This article offers an inclusive, equilibrium model to (...) conceptualize the spectrum of challenge that this interplay of desirable but oppositional values creates. The model illustrates the relationship between information privacy and information flow, and that between individual and society-level needs, within the resulting impact sectors of individual security, health care priorities, public health effectiveness, and e-health development, while specifying beneficial outcomes for each. (shrink)

Brain–computer interfacing technologies are used as assistive technologies for patients as well as healthy subjects to control devices solely by brain activity. Yet the risks associated with the misuse of these technologies remain largely unexplored. Recent findings have shown that BCIs are potentially vulnerable to cybercriminality. This opens the prospect of “neurocrime”: extending the range of computer-crime to neural devices. This paper explores a type of neurocrime that we call brain-hacking as it aims at the illicit access to and manipulation (...) of neural information and computation. As neural computation underlies cognition, behavior and our self-determination as persons, a careful analysis of the emerging risks of malicious brain-hacking is paramount, and ethical safeguards against these risks should be considered early in design and regulation. This contribution is aimed at raising awareness of the emerging risk of malicious brain-hacking and takes a first step in developing an ethical and legal reflection on those risks. (shrink)

The four principles approach to bioethics, an approach most associated with the work of Tom Beauchamp and James Childress, is supposed to provide a framework for reasoning through moral issues in medicine. One might wonder, if one were to guide one’s thinking by the method suggested by principlism, will one identify and perform the objectively morally right action? Will one’s decision making be justified, and consequently, will the action that flows from that decision itself be justified? In this paper, I (...) show that principlism can, and has been, characterized in these two different ways. I also argue that when it is understood according to the first characterization, the view cannot be put into practice. However, when it is understood as an account of justification, there is reason to think that it is indeed action-guiding. Given the problems that confront the first version of the view, perhaps it is best to understand principlism, and biomedical ethical theories generally, not as action-guiding theories of right action, but rather, as procedures by which one’s decisions and actions in medicine can achieve a reasonable degree of moral justification. (shrink)

As healthcare institutions expand and vertically integrate, healthcare delivery is less constrained by geography, nationality, or even by institutional boundaries. As part of this trend, some aspects of the healthcare process are shifted from medical centers back into the home and communities. Telehealth applications intended for health promotion, social services, and other activitiesprovide services outside clinical settings in homes, schools, libraries, and other governmental and community sites. Such developments include health information web sites, on-line support groups, automated telephone counseling, interactive (...) health promotion programs, and electronic mail exchanges. Concomitant with these developments is the growth of consumer health informatics, in which individuals seeking medical care or information are able to find various health information resources that take advantage of new information technologies. (shrink)

ABSTRACT In genomic research the ideal standard of free, informed, prior and explicit consent is sometimes difficult to apply. This has raised concern that important genomic research will be restricted. Different consent procedures have therefore been proposed. This paper explicitly examines the question how, in genomic research, the principles of solidarity and justice can be used to justify forms of diminished individual control over personal data and bio‐samples. After a discussion of the notions of solidarity and justice and how they (...) can be related to health care and genomic research, we examine how and in which situations these notions can form a strong moral basis for demanding certain financial sacrifices. Then we examine when these principles can justify consent procedures which diverge from the ideal standard. Because much genomic research is not expected to lead to immediate (clinical) benefits we also discuss the question of whether we can be obliged to make any sacrifices for future (not yet existing) patients. We conclude with the formulation of a number of conditions that have to be met before autonomy sacrifices can be reasonably demanded in genomic research. (shrink)

Rapid advances in high throughput genomic technologies and next generation sequencing are making medical genomic research more readily accessible and affordable, including the sequencing of patient and control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards sequencing of numerous African samples for (...) biomedical research. (shrink)

BackgroundLarge-scale genetic data sets are frequently shared with other research groups and even released on the Internet to allow for secondary analysis. Study participants are usually not informed about such data sharing because data sets are assumed to be anonymous after stripping off personal identifiers.DiscussionThe assumption of anonymity of genetic data sets, however, is tenuous because genetic data are intrinsically self-identifying. Two types of re-identification are possible: the "Netflix" type and the "profiling" type. The "Netflix" type needs another small genetic (...) data set, usually with less than 100 SNPs but including a personal identifier. This second data set might originate from another clinical examination, a study of leftover samples or forensic testing. When merged to the primary, unidentified set it will re-identify all samples of that individual.Even with no second data set at hand, a "profiling" strategy can be developed to extract as much information as possible from a sample collection. Starting with the identification of ethnic subgroups along with predictions of body characteristics and diseases, the asthma kids case as a real-life example is used to illustrate that approach.SummaryDepending on the degree of supplemental information, there is a good chance that at least a few individuals can be identified from an anonymized data set. Any re-identification, however, may potentially harm study participants because it will release individual genetic disease risks to the public. (shrink)

Information security can be of high moral value. It can equally be used for immoral purposes and have undesirable consequences. In this paper we suggest that critical theory can facilitate a better understanding of possible ethical issues and can provide support when finding ways of addressing them. The paper argues that critical theory has intrinsic links to ethics and that it is possible to identify concepts frequently used in critical theory to pinpoint ethical concerns. Using the example of UK electronic (...) medical records the paper demonstrates that a critical lens can highlight issues that traditional ethical theories tend to overlook. These are often linked to collective issues such as social and organisational structures, which philosophical ethics with its typical focus on the individual does not tend to emphasise. The paper suggests that this insight can help in developing ways of researching and innovating responsibly in the area of information security. (shrink)

Successful technologies’ ubiquity changes uses, users and ethicolegal responsibilities and duties of care. We focus on dementia to review critically ethicolegal implications of increasing use of social networking sites (SNS) by those with compromised decision-making capacity, assessing concerned parties’ responsibilities. Although SNS contracts assume ongoing decision-making capacity, many users’ may be compromised or declining. Resulting ethicolegal issues include capacity to give informed consent to contracts, protection of online privacy including sharing and controlling data, data leaks between different digital platforms, and (...) management of digital identities and footprints. SNS uses in healthcare raise additional issues. Online materials acting as archives of ‘the self’ bolster present and future identities for users with compromised capacity. E-health involves actual and potential intersection of data gathered for the purpose of delivering health technological support with data used for social networking purposes. Ethicolegal guidance is limited on the implications of SNS usage in contexts where users have impaired/reduced capacity to understand and/or consent to sharing personal data about their health, medication or location. Vulnerable adults and family/carers face uncertainty in regard to consent, data protection, online identity and legal liabilities. Ethicolegal responsibilities and duties of care of technology providers, healthcare professionals, regulatory bodies and policymakers need clarification. (shrink)