In this round table response, we discuss some of the problems inherent in insisting on specific consent for an activity that needs to happen rapidly as part of a package of care. The Human Tissue Authority consider that specific consent is mandatory to assess which antibiotics are appropriate on the neonatal unit, but this insistence may actually limit the autonomy which consent aims to promote. While genetic testing to determine which child will react adversely to particular antibiotics has been available (...) clinically for several years, the research proposed here is to assess whether improving the speed of testing allows decisions to be made before treatment starts. Insisting on specific consent before this activity can take place is likely to delay appropriate care in some cases. On admission to the neonatal unit, the unwell infant is routinely subjected to a range of investigations and treatments. A person with parental responsibility will usually be asked to provide consent to undertake treatments for children who do not have capacity to give consent themselves.1 For the acutely unwell child, consent will usually be sought for a package of care: the urgent nature of neonatal medicine often requires clinicians to make many decisions without explicit consent. Doctors must always act in a child’s best interests: their decisions need to protect the health and well-being of a child and hold the child’s welfare paramount in accordance with the Children Act and General Medical Council guidelines.1 2 Thus, for example, ventilation might be initiated, sedation provided, antibiotics commenced or diagnostic investigations requested without separate consent conversations or …. (shrink)
Should Proverbs be read as prose or poetry? Considering the language craft is of essential significance for a hermeneutical enquiry into the biblical book of Proverbs. Five suppositions to support the presupposition that Proverbs is best read as poetry were considered.
Gyngell and colleagues consider that the recent Nuffield Council report does not go far enough: heritable genome editing is not just justifiable in a few rare cases; instead, there is a moral imperative to undertake it. We agree that there is a moral argument for this, but in the real world it is mitigated by the fact that it is not usually possible to ensure a better life. We suggest that a moral imperative for HGE can currently only be concluded (...) if one first buys into an overly deterministic view of a genome sequence, and the role of variation within in it, in the aetiology of the disease: most diseases cannot simply be attributed to specific genetic variants that we could edit away. Multiple, poorly understood genetic and environmental factors interact to influence the expression of diseases with a genetic component, even well understood ‘monogenic’ disorders. Population-level genome analyses are now demonstrating that many genetic ’mutations' are much less predictive than previously thought 1. Furthermore, HGE might introduce new risks just as it reduces old ones; or remove protections not yet clearly delineated. (shrink)
The UK Genethics Club was established in November 2001 in order to provide a national forum of ethics support for the profession of clinical genetics in the UK. The forum brings together health professionals, medical ethicists and lawyers and support is provided through detailed discussion of cases and sharing of good practice. Clinical genetics professionals had previously voiced concerns about making extremely difficult ethical decisions, with profound implications, in something of a vacuum. Professionals saw a lack of guidance in the (...) area and lack of time for discussion of difficult cases as reasons for this. This paper describes the origins of the group and gives (anonymized) examples of some of the types of issues discussed. (shrink)
This article investigates a high-profile and ongoing dilemma for healthcare professionals, namely whether the existence of a duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty (...) of care to the patient’s close relatives could coexist in this context. This article examines whether embracing the concept of coexisting duties could enable HCPs to respect duties in line with their clinical judgement, thereby providing legal support and clarity to professionals to allow them to provide the best possible genetics service to both the patient and their family. We argue that these dual duties, framed as a novel, composite duty to consider the interests of genetic relatives, could allow HCPs to exercise and act on their professional judgements about the relative value of information to family members, without fears of liability for negligence or breach of confidence. (shrink)
One of the major issues in the debate about the future of health care is how to keep costs under control while meeting growing demands for care. Addressing that, especially on an international scale, is far from easy. How are we to determine what the demands for care will most likely be? Even if it is not possible to estimate the future number of dependent elderly persons with any precision, it is hard to ignore the most probable scenario: a substantial (...) increase in the number of the oldest old. (shrink)
This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of consent: first, (...) how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. (shrink)
This article extends the definition of sensationalism to print media by arguing that language intensifiers may be an aspect of sensationalism. In addition, this paper investigates if an indirect effect can be established by which sensationalistic message features influence news reception through the perception of sensationalism. Two between-subjects experiments show that sensationalistic message features like intensifiers increase perceived language intensity. In experiment 1, intensifiers had a negative effect on news article appreciation, which was not influenced by PLI. Experiment 2 revealed (...) positive indirect effects of intensifiers through PLI on newsworthiness and news article appreciation. (shrink)
We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier of (...) a ‘harmful inherited condition’. We suggest that we cannot conjecture what her current answer might be if, by participating in clinical genetic testing, she might help reach a diagnosis for the donor-conceived child. At the point that she made choices regarding future contact, it was not yet evident that the interests of the donor-conceived child might be compromised by her answers, as it was not foreseen that the egg donor’s genome might one day have the potential to enable diagnosis for this child. Fertility consent forms tend to be conceptualised as representing incontrovertible historical boundaries, but we argue that rapid evolution in genomic practice means that consent in such cases is better seen as an ongoing and dynamic process. It cannot be possible to compel the donor to aid in the diagnosis of the donor-conceived child, but she should be given the opportunity to do so. (shrink)
We thank Parker and Wright for engaging in this roundtable debate in such a spirited way. The ‘Pharmacogenetic [test] to Avoid Loss of Hearing’ Trial is the first time a genetic point of care test has been applied in the acute neonatal setting; therefore, it is not surprising that questions have been raised which require debate, discussion and clarification. Parker and Wright misattribute several assumptions to the roundtable authors, which we would like to clarify here. Since they raise wider questions (...) about the PALOH trial itself, several of the roundtable discussants have made a joint response. (shrink)
Several models of narrative persuasion posit that a reader's phenomenological experience of a narrative plays a mediating role in the persuasive effects of the narrative. Because the narrative reading experience is multi-dimensional, this experiment investigates which dimensions of this experience – referred to here as narrative engagement – mediate between reading a story and the persuasive effects of the story. Narrative engagement was manipulated by giving participants a selection task to carry out while reading or by adding language errors to (...) the story. Results showed that the task decreased the engagement dimension Being in Narrative World and the language errors decreased the dimension Attentional Focus. No corresponding effects on attitudes were found. However, comparisons with a control group showed that reading the story rendered attitudes more consistent with the story. Regression analysis indicated that this effect may be explained by readers' emotions regarding the characters. (shrink)
Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research—including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional (...) stakeholders involved in 100kGP, we investigate the ethical issues raised by this project’s hybrid nature. While some interviewees thought the hybrid nature of 100kGP was its vanguard, interviewees identified several tensions around hybrid practice: how to decide who should be able to participate; how to determine whether offering results might unduly influence participation into wide-ranging but often as yet unknown research and how to ensure that patients/families do not develop false expectations about receiving results. These areas require further debate as 100kGP moves into routine healthcare in the form of the national genomic medicine service. To address the tensions identified, we explore the appropriateness of Faden et al.’s framework of ethical obligations for when research and clinical care are completely integrated. We also argue that enabling ongoing transparent and trustworthy communication between patients/families and professionals around the kinds of research that should be permitted in 100kGP will help to understand and ensure that expectations remain realistic. Our paper aims to encourage a focused discussion about these issues and to inform a new ‘social contract’ for research and clinical care in the health service. (shrink)
In the past, biblical scholarship has neglected the hermeneutical contribution that an imaginai engagement with the text may make. The author's aim in this article was to develop theological imagination as a hermeneutical device. This was done by briefly considering the concurrence in the hermeneutic contributions of three interpreters of biblical texts, with specific regard to their understanding of biblical imagination. These were Walter Brueggemann, Paul Ricoeur and Ignatius of Loyola. Their hermeneutical contributions concur in their understanding of a biblically (...) informed imagination, and it is specifically this aspect of the concurrence of their thought that was explored. An illustration from Proverbs 14:27, which draws on the metaphor and biblical motif of the fountain or source of life, was put forward to demonstrate how the concurrence in the contributions of these biblical interpreters may influence an imaginal engagement with the text. (shrink)
A Ricoeurian hermeneutic affords readers of the Old Testament an opportunity to access the biblical text anew as a source and norm for faith. Reese gave a convenient summarising description of Ricoeur’s hermeneutical approach. Ricoeur organised his considerations around four poles, namely distanciation, objectification, projecting of a world, and appropriation. These operate as the structuring considerations of a Ricoeurian hermeneutic and were illustrated with a sample proverb from the collection Proverbs 10:1–15:33.
The aim of this study is to assess patients' recall of their previous research participation. Recall was established during interviews and compared with entries from clinical notes. Participants were 49 patients who had previously participated in different types of research. Of the 49 patients, 45 (92%) interviewees recalled 69 of 109 (63%) study participations. Level of recall varied according to the type of research, some participants clearly recalled the details of research aims, giving consent and research procedures. Others recalled procedures (...) (e.g. DNA testing) but were unclear about their purpose. There was no significant effect of time on recall. Some types of research participation (e.g. DNA testing) may be recalled as clinical care. We argue that such misunderstandings may have the potential to undermine participants' ongoing consent, particularly in ongoing/longitudinal studies. Valid consent may be best achieved by re-assessing the scope of consent and relating it to the nature of the interventions themselves rather than the reasons for undertaking them. (shrink)
Can epistemologies anchor processes of social inequality? In this paper, we consider how epistemological dominance in science, engineering, and health fields perpetuates disadvantages for students who enter higher education with alternative epistemologies. Drawing on in-depth interviews with Native American students enrolled at two US research universities who adhere to or revere indigenous epistemologies, we find that epistemological dominance in SE&H degree programs disadvantages students through three processes. First, it delegitimizes Native epistemologies and marginalizes and silences students who value them. Second, (...) in the process of imparting these dominant scientific epistemologies, SE&H courses sometimes require students to participate in pedagogical practices that challenge indigenous ways of knowing. Third, students encounter epistemological imperialism: most students in the sample are working to earn SE&H degrees in order to return to tribal communities to “give back,” yet, because the US laws regulating the practice of SE&H extend onto tribal lands, students must earn credentials in epistemologies that devalue, delegitimate, and threaten indigenous knowledge ways to practice on tribal lands. We examine how students navigate these experiences, discuss the implications of these findings for SE&H education, and describe how epistemological dominance may serve as a mechanism of inequality reproduction more broadly. (shrink)