Elisabeth Kübler-Ross’ seminal 1969 work, On Death and Dying, opened the door to understanding individuals’ emotional experiences with serious illness and dying. Patient’s emotions, however, are on...

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

Loi recently proposed a libertarian right to direct to consumer genetic testing — independent of autonomy or utility—reflecting Cohen’s work on self-ownership and Hohfeld’s model of jural relations. Cohen’s model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal (...) physical copy of the genome, triggering rights and interests of relatives that may differ from the rights and interests of others, that is, individual consumers, testing providers and regulators. Loi argued that regulatory interference with exercise of the right required justification, whereas prima facie exercise of the right did not. Justification of regulatory interference could include ‘conflict with other people’s rights’, ‘aggressive’ use of the genome and ‘harming others’. Harms potentially experienced by relatives as a result of the individual’s exercise of a right to test include breach of genetic privacy, violation of their right to determine when, and if, they undertake genetic testing and discrimination. Such harms may justify regulatory intervention, in the event they are recognised; motives driving ‘aggressive’ use of the genome may also be relevant. Each of the above criteria requires clarification, as potential redundancies and tensions exist between them, with different implications affecting different groups of rights holders. (shrink)

Recognition of legal personhood in contemporary international and domestic law is a matter of signs. Those signs identify the existence of the legal person: human animals, corporations and states. They also identify facets of that personhood that situate the signified entities within webs of rights and responsibilities. Entities that are not legal persons lack agency and are thus invisible. They may be acted on but, absent the personhood that is communicated through a range of indicia and shapes both legal and (...) popular understanding of powers and obligations, they lack standing in judicial fora. They are signified as entities that are the subjects of action by legal persons, for example exploitation through rights regarding natural resources or commodification of ‘wild’, companion and other non-human animals. They are also signified as members of a diverse class of non-persons such as ‘nature’ and ‘the environment’. This article explores the consequences of law’s signification of personhood and the natural world before asking whether we both should and could recognise domains such as specific rivers, forests or even Antarctica as a type of legal person. Recognition might acknowledge the salience of nature in the ontologies of colonised First Peoples. It might also underpin a global response to climate change as the existential crisis of the Anthropocene. In understanding law as a matter of signifiers and syntaxes the article cautions that ostensible recognition of some domains as persons has been aspirational rather than substantive, with observers misreading the sign as necessarily transforming power relationships. The article also cautions that personhood for nature or particular domains may be contrary to the self-determination of colonised First Peoples. (shrink)

In their criticism of Maoism, contemporary Soviet philosophers follow the basic structure of the orthodox presentation of Marxism — Leninism and use the whole panoply of polemical tools which the Leninist heritage offers them. Thus far, this anti — Maoism is generally maladroit and often self-contradictory.

The aim of this essay is to give a high-level overview of Irenaeus’s beatific vision, and to suggest that for him, the beatific vision has a temporal dimension (now and future) and a dimension of degree (lesser now, greater in the future). His beatific vision is witnessed as it intersects with at least four main ideas in his writing—the Trinity, anthropology, resurrection, and his eschatology. Irenaeus famously held that ‘the glory of God is living man, and the life of man (...) is the vision of God’ (AH 4.20.7), which speaks to the reality of seeing God in the present, but he could also look forward in anticipation to beholding the face of God in the resurrected body in the new creation. What made the latter possible is the gradual beholding of God in the present that makes one prepared to see God’s glory in the future. Additionally, the visio Dei is Trinitarian. We behold God in Christ, since God the Father is invisible, and it is the Holy Spirit who prepares us incrementally to see God. (shrink)

In this paper the Hurwicz decision rule is applied to an adjustment problem concerning the decision whether a given action should be improved in the light of some knowledge on the states of nature or on other actors' behaviour. In comparison with the minimax and the minimin adjustment principles the general Hurwicz rule reduces to these specific classes whenever the underlying loss function is quadratic and knowledge is given by an ellipsoidal set. In the framework of the adjustment model discussed (...) in this paper Hurwicz's optimism index can be interpreted as a mobility index representing the actor's attitude towards new external information. Examples are given that serve to illustrate the theoretical findings. (shrink)

Along with many jurisdictions, Australia is struggling with the unique issues raised by genetic information in the context of privacy laws and medical ethics. Although the consequences of disclosure of most private information are generally confined to individuals, disclosure of genetic information has far-reaching consequences, with a credible argument that genetic relatives have a right to know about potential medical conditions. In 2006, the Privacy Act was amended to permit disclosure of an individual's genetic information, without their consent, to genetic (...) relatives, if it was to avoid or mitigate serious illness. Unfortunately, additional amendments required for operation of the disclosure amendment were overlooked. Public Interest Determinations —delegated legislation issued by the privacy commissioner—have, instead, been used to exempt healthcare providers from provisions which would otherwise make disclosure unlawful. This paper critiques the PIDs using documents obtained under the Freedom of Information Act—specifically the impact of both the PIDs and the disclosure amendment on patients and relatives—and confidentiality and the procedural validity of subordinate laws regulating medical privacy. (shrink)

We appreciate the opportunity to present some further thoughts on the libertarian right to test initially proposed by Loi, and hope these additional comments will further inform debate about this critical emerging technology. Loi’s important argument is that individuals possess a prima facie libertarian right to test their genomes and that regulatory intervention restricting genetic testing must be justified by those proposing regulation. Our position is that the onus of justifying regulation is reversed. The risk to others whose genomic information (...) is shared with the individual is potentially significant enough to warrant prima facie regulatory intervention, including protection against misuse of genetic information derived from those tests, not just against the individual tested but also against those who for reasons of common familial ancestry are also susceptible to misuse. Testing an individual’s genome does not merely reveal information about that individual; it reveals, or renders reasonably inferable, information about the genomes of close relatives due to the commonality of genomic DNA within families. Such commonality is not merely ‘incidentally identical’: it is instead inevitable given the shared nature of genomic DNA sequences within families. ‘Incidental identity’ may appropriately describe the statistical possibility of two unrelated individuals in the human …. (shrink)