Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)

Although informed consent models for prescribing hormone replacement therapy are becoming increasingly prevalent, many physicians continue to require an assessment and referral letter from a mental health professional prior to prescription. Drawing on personal and communal experience, the author argues that assessment and referral requirements are dehumanising and unethical, foregrounding the ways in which these requirements evidence a mistrust of trans people, suppress the diversity of their experiences and sustain an unjustified double standard in contrast to other forms of clinical (...) care. Physicians should abandon this unethical requirement in favour of an informed consent approach to transgender care. (shrink)

Personalism is one of the philosophical perspectives which hold that the reality in person and the human person has the highest intrinsic value. This paper makes reference to Louis Janssens' eight criteria in adequate consideration of the human person but further argues that there is need to consider people as situated agents especially within gender relational perspectives. The paper identifies gender as an important social construction that shapes the consideration of the human persons within socio-spatial spheres. The main crux of (...) the paper is that there is a gender context of personalism and this has profound implications for bioethical agendas. Gender is part of the human condition, especially when we philosophically or sociologically engage the notion of equity and equality within the social system, because social realities in the relational perspective are not impartial, impersonal and equal. Gender does not determine morality but it plays a role in morality and expectations from moral agents. Women have been categorised as a sociological group because their integrity, freedom/autonomy and dignity (which are basic concerns of bioethics) are capable of being threatened. A gender perspective provides important incentives for moral theory which searches for possible conceptual imbalances or blind spots in ethical reflections. The paper refers to Sen's faces of gender inequality and expands on the notion that natality inequality is one of the fundamental levels of gender inequality, which in turn is the primary starting agenda in bioethics. The paper avers that the recognition of the fundamental importance of gender to the organization of social reality and the development of personal identities have important practical implications for bioethics. (shrink)

Following the trend of sharing, and associating being on-line with being 'on-life', many people are now demanding the ownership and control of their data across all processing phases, including the erasure of their presence on the web. In Europe, recent proposals for regulation include an explicit 'Right to be Forgotten'; this right stated in the European Commission Proposal for Regulation COM 2011/12 does not emerge without controversy. It is being criticised on several grounds, including clashing with other rights, such as (...) freedom of expression, as well as setting the terrain for censorship. Besides the purely legal aspects of the proposed provisions, the chapters of this volume discuss how those legal provisions correspond in practice to worldviews and how individual and collective memory must be governed. They look into the deeper consequences of such provisions to construction of identity, culture and community formation, and how such a right affects how, what and why individuals, groups and societies remember and forget. (shrink)

Viktor Mayer-Schönberger, Delete: the virtue of forgetting in the digital age Content Type Journal Article DOI 10.1007/s12394-010-0039-x Authors Matthew L. Smith /, International Development Research Centre Ottawa Canada Journal Identity in the Information Society Online ISSN 1876-0678 Journal Volume Volume 2 Journal Issue Volume 2, Number 3.

What is privacy? What does privacy mean in relation to biobanking, in what way do the participants have an interest in privacy, (why) is there a right to privacy, and how should the privacy issue be regulated when it comes to biobank research? A relational view of privacy is argued for in this article, which takes as its basis a general discussion of several concepts of privacy and attempts at grounding privacy rights. In promoting and protecting the rights that participants (...) in biobank research might have to privacy, it is argued that their interests should be related to the specific context of the provision and reception of health care that participation in biobank research is connected with. Rather than just granting participants an exclusive right to or ownership of their health information, which must be waived in order to make biobank research possible, the privacy aspect of health information should be viewed in light of the moral rights and duties that accompany any involvement in a research based system of health services. (shrink)

This article addresses the long-standing problem of how to understand Mill’s famous harm principle in light of his failure to specify what counts as “harm” in On Liberty. I argue that standard accounts restricting “harm” to only certain negative consequences fail to do justice to the text, and that this fact forces us to rethink Mill’s defense of individual liberty. I then offer a new account of that defense in which “harm” is understood in an expansive sense, despite apparent problems (...) for such a view. (shrink)

Mill’s harm principle is commonly supposed to rest on a distinction between self-regarding conduct, which is not liable to interference, and other-regarding conduct, which is. As critics have noted, this distinction is difficult to draw. Furthermore, some of Mill’s own applications of the principle, such as his forbidding of slavery contracts, do not appear to fit with it. This article proposes that the self-regarding/other-regarding distinction is not in fact fundamental to Mill’s harm principle. The sphere of protected liberty includes not (...) only self-regarding conduct, but also actions that affect only consenting others. On the other hand, the occasional permissibility of interfering with self-regarding conduct can plausibly be explained by reference to the agent’s consent. Thus, the more important distinction appears to be that between consensual and non-consensual harm, rather than that between the self-regarding and non-self-regarding action. That is, interference can be justified in order to prevent non-consensual harms, but not to prevent consensual harms. It is argued that the harm principle, thus reformulated, both captures Mill’s intentions and is a substantively plausible position. (shrink)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...) without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

On 10 December 1948, the General Assembly ofthe United Nations adopted and proclaimed the Universal Declaration of Human Rights, a truly historic document, the full text of which is reproduced here. Following this historic act, the Assembly called upon all Member countries to publicize the text of the Declaration and "to cause it to be disseminated, displayed, read and expounded principally in schools and other educational institutions, without distinction based on the political status of countries or territories." Jacques Maritain was (...) actively involved in the drafting of the Declaration, especially its clauses regarding freedom of conscience and religious expression. (shrink)

The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...) of Big Data lags behind. In order to bridge such a gap, this article systematically and comprehensively analyses academic literature concerning the ethical implications of Big Data, providing a watershed for future ethical investigations and regulations. Particular attention is paid to biomedical Big Data due to the inherent sensitivity of medical information. By means of a meta-analysis of the literature, a thematic narrative is provided to guide ethicists, data scientists, regulators and other stakeholders through what is already known or hypothesised about the ethical risks of this emerging and innovative phenomenon. Five key areas of concern are identified: informed consent, privacy, ownership, epistemology and objectivity, and ‘Big Data Divides’ created between those who have or lack the necessary resources to analyse increasingly large datasets. Critical gaps in the treatment of these themes are identified with suggestions for future research. Six additional areas of concern are then suggested which, although related have not yet attracted extensive debate in the existing literature. It is argued that they will require much closer scrutiny in the immediate future: the dangers of ignoring group-level ethical harms; the importance of epistemology in assessing the ethics of Big Data; the changing nature of fiduciary relationships that become increasingly data saturated; the need to distinguish between ‘academic’ and ‘commercial’ Big Data practices in terms of potential harm to data subjects; future problems with ownership of intellectual property generated from analysis of aggregated datasets; and the difficulty of providing meaningful access rights to individual data subjects that lack necessary resources. Considered together, these eleven themes provide a thorough critical framework to guide ethical assessment and governance of emerging Big Data practices. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

Introduction to one of the most important, controversial, and suggestive works of moral philosophy ever written.

This volume contains essays which cover a range of aspects in the debate over genetic testing. It looks at both the advantages and disadvantages involved in knowing or not knowing whether one is a carrier of certain genetic traits.

Samuel Freeman was a student of the influential philosopher John Rawls, he has edited numerous books dedicated to Rawls' work and is arguably Rawls' foremost interpreter. This volume collects new and previously published articles by Freeman on Rawls. Among other things, Freeman places Rawls within historical context in the social contract tradition, and thoughtfully addresses criticisms of this position. Not only is Freeman a leading authority on Rawls, but he is an excellent thinker in his own right, and these articles (...) will be useful to a wide range of scholars interested in Rawls and the expanse of his influence. (shrink)

Preconception sex selection for non-medical reasons raises serious moral, legal and social issues. The main concerns include the threat of a sex ratio distortion due to a common preference for boys over girls, the charge of sexism, the danger of reinforcing gender stereotypical behaviour in sex selected children, and the fear of a slippery slope towards creating designer babies. This paper endeavours to show that none of the objections to preconception sex selection is conclusive and that there is no justification (...) for denying parents the right to choose the sex of their prospective children. (shrink)