Characteristics and patients' portrayals of Norwegian social media memes. A mixed methods analysis.

Background: Despite reports on troublesome contents created and shared online by healthcare professionals, a systematic inquiry of this potential problem has been missing. Our objective was to characterize the content of healthcare-associated social media memes in terms of common themes and how patients were portrayed. Materials and methods: This study applied a mixed methods approach to characterize the contents of Instagram memes from popular medicine- or nursing-associated accounts in Norway. In total, 2,269 posts from 18 Instagram accounts were included and coded for thematic contents. In addition, we conducted a comprehensive thematic analysis of 30 selected posts directly related to patients. Results: A fifth of all posts (21%) were related to patients, including 139 posts (6%) related to vulnerable patients. Work was, however, the most common theme overall (59%). Nursing-associated accounts posted more patient-related contents than medicine-associated accounts (p < 0.01), but the difference may be partly explained by the former focusing on work life rather than student life. Patient-related posts often thematized (1) trust and breach of trust, (2) difficulties and discomfort at work, and (3) comical aspects of everyday life as a healthcare professional. Discussion: We found that a considerable number of Instagram posts from healthcare-associated accounts included patients and that these posts were diverse in terms of contents and offensiveness. Awareness that professional values also apply online is important for both healthcare students and healthcare providers. Social media memes can act as an educational resource to facilitate discussions about (e-)professionalism, the challenges and coping of everyday life, and ethical conflicts arising in healthcare settings.

A practical checklist for return of results from genomic research in the European context.

An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject's right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are mostly project-specific, only discuss which results to return, or were developed outside Europe. To address this gap, we analysed existing normative documents identified online using inductive content analysis. We used this analysis to develop a checklist of steps to assist European researchers considering whether to return IRR to participants. We then sought feedback on the checklist from an interdisciplinary panel of European experts (clinicians, clinical researchers, population-based researchers, biobank managers, ethicists, lawyers and policy makers) to refine the checklist. The checklist outlines seven major components researchers should consider when determining whether, and how, to return results to adult research participants: 1) Decide which results to return; 2) Develop a plan for return of results; 3) Obtain participant informed consent; 4) Collect and analyse data; 5) Confirm results; 6) Disclose research results; 7) Follow-up and monitor. Our checklist provides a clear outline of the steps European researchers can follow to develop ethical and sustainable result return pathways within their own research projects. Further legal analysis is required to ensure this checklist complies with relevant domestic laws.

Postponed Withholding: Balanced Decision-Making at the Margins of Viability.

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support into an ethical dilemma. Shared decision-making with parents has gained ground. However, the need to start immediate life support and the ensuing difficulty of withdrawing treatment stands in tension with the possibility of a fair decision-making process. Both the parental "instinct of saving" and "withdrawal resistance" involved can preclude shared decision-making. To help health care personnel and empower parents, we propose a novel approach labeled "postponed withholding." In the absence of a prenatal advance directive, life support is started at birth, followed by planned redirection to palliative care after one week, unless parents, after a thorough counseling process, actively ask for continued life support. Despite the emotional challenges, this approach can facilitate ethically balanced decision-making processes in the gray zone.

Trisomy 21 - incidence, diagnostics and pregnancy terminations 1999-2018. / Trisomi 21 ­ insidens, diagnostikk og svangerskapsavbrudd 1999­2018.

BACKGROUND: We hypothesised that the examinations offered to pregnant women at fetal medicine centres differ from those offered to other pregnant women in Norway. We therefore wanted to investigate the incidence, prenatal diagnostics and pregnancy terminations in cases of trisomy 21. We also wanted to compare the figures from the National Center for Fetal Medicine, St Olav's Hospital, Trondheim University Hospital, with national figures for Norway. MATERIAL AND METHOD: We analysed figures for the period 1999-2018 retrospectively. National data were compared with an unselected population whose local hospital is St Olav's Hospital. National figures were retrieved from the Medical Birth Registry of Norway and local figures were from the quality registry at the National Center for Fetal Medicine. RESULTS: The national incidence of trisomy 21 was 0.20 %, varying from 0.14 % to 0.23 %, and showed a significant increase over time (p < 0.01). The increasing incidence showed an association with increasing age in the women (p < 0.01). The incidence of live births was stable, even though the proportion of pregnancy terminations increased. In the local population, the incidence of trisomy 21 was 0.19 %. A total of 68.2 % of the local population were diagnosed prenatally, and 87.7 % of these pregnant women terminated the pregnancy. There was a significantly higher proportion of pregnancy terminations in the local population than in the remainder of the national population (p < 0.01). INTERPRETATION: The difference in the proportion of pregnancy terminations may be associated with variation in access to prenatal diagnostics.

Taking it to the bank: the ethical management of individual findings arising in secondary research.

A rapidly growing proportion of health research uses 'secondary data': data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research (ie, where data are collected from participants directly), it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants.

Attitudes to prenatal screening among Norwegian citizens: liberality, ambivalence and sensitivity.

BACKGROUND: Norway's liberal abortion law allows for abortion on social indications, yet access to screening for fetal abnormalities is restricted. Norwegian regulation of, and public discourse about prenatal screening and diagnosis has been exceptional. In this study, we wanted to investigate whether the exceptional regulation is mirrored in public attitudes. METHOD: An electronic questionnaire with 11 propositions about prenatal screening and diagnosis was completed by 1617 Norwegian adults (response rate 8.5%). RESULTS: A majority of respondents supports increased access to prenatal screening with ultrasound (60%) and/or full genome sequencing of fetal DNA (55%) available for all pregnant women. Significant minorities indicate, however, that a public offer of prenatal screening for all pregnant women would signal that people with Down syndrome are unwanted (46%) or could be criticized for contributing to a 'sorting society' (48%). CONCLUSIONS: Results indicate deeper ambivalences and a cultural sensitivity to the ethical challenges of prenatal screening and subsequent abortions. The specific diagnosis of Down syndrome and the fear of becoming a 'sorting society' which sorts human life due to diagnoses, appear to play prominent roles in citizen deliberations. The low response rate means that a non-response bias cannot be excluded, yet reasons why results are still likely to be of value are discussed.

From Prenatal Diagnosis to Preterm Infants: A Cultural Guide to Understand Scandinavian Variation.

The Scandinavian neighbors, Denmark, Sweden, and Norway, are 3 similar countries. Still, the practice and the policy on extreme premature infants are different in each of them. Why is this so? In this article, I will try to show that the differences are not primarily a result of individual disagreement among leading doctors in the 3 countries but has a cultural explanation. I compare the policies on preterm infants with a nearby one, that of prenatal diagnosis. It seems clear that the policies and practices reflect distinct features in the mentality and values of each nation. Context matters, even in situations that at first glance appear as identical. Variation in neonatal practice and policies between countries is not necessarily bad, because the cultural context is part of the moral situation in which doctors and parents decide.

Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?

In the endeavour of biobank research there is dispute concerning what type of consent and which form of donor-biobank relationship meet high ethical standards. Up until now, a 'broad consent' model has been used in many present-day biobank projects. However it has been, by some scholars, deemed as a pragmatic, and not an acceptable ethical solution. Calls for change have been made on the basis of avoidance of paternalism, intentions to fulfil the principle of autonomy, wish for increased user participation, a questioning of the role of experts and ideas advocating reduction of top-down governance. Recently, an approach termed 'dynamic consent' has been proposed to meet such challenges. Dynamic consent uses modern communication strategies to inform, involve, offer choices and last but not the least obtain consent for every research projects based on biobank resources. At first glance dynamic consent seems appealing, and we have identified six claims of superiority of this model; claims pertaining to autonomy, information, increased engagement, control, social robustness and reciprocity. However, after closer examination, there seems to be several weaknesses with a dynamic consent approach; among others the risk of inviting people into the therapeutic misconception as well as individualizing the ethical review of research projects. When comparing the two models, broad consent still holds and can be deemed a good ethical solution for longitudinal biobank research. Nevertheless, there is potential for improvement in the broad model, and criticism can be met by adapting some of the modern communication strategies proposed in the dynamic consent approach.

We're not in it for the money-lay people's moral intuitions on commercial use of 'their' biobank.

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: "Biological materials should not, as such, give rise to financial gain". Similarly, Norwegian legislation reads: "Commercial exploitation of research participants, human biological material and personal health data in general is prohibited". Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants' major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing.

Should genetic findings from genome research be reported back to the participants?

BACKGROUND: Today, new and powerful sequencing technology is being used in biomedical research. In parallel, an intense ethical debate has arisen regarding the handling of the information which is generated through such comprehensive analyses. The conflict concerns whether any findings made during research, intended or incidental, should be reported back to the individual research participant. KNOWLEDGE BASIS: We reviewed international academic literature that has addressed the issue of feedback from genetic studies. The arguments in favour and against providing individual information from genome research to research participants were reviewed. Key arguments in this debate are presented and commented on. RESULTS: A growing number of voices argue in favour of return of research-generated genetic information with reference to key values such as autonomy, respect, charity, mutuality and reciprocity. The counter-arguments are not as easily accessible, but concern the fundamental distinction between research and treatment, which indicates that researchers are not obliged to provide individual information to participants. Partly, the counter-arguments focus on the possible unfortunate consequences that such feedback may have for individuals, research and society as a whole. INTERPRETATION: We are standing at a crossroads with regard to assessing whether returning research-generated genetic risk information at the individual level is a moral imperative. Here, individually based research ethics run up against concerns of social medicine and research-based obligations. The right balance has probably not yet been found.

[Genetic counseling in congenital long QT syndrome]. / Genetisk veiledning ved medfødt lang QT-syndrom.

BACKGROUND: Long QT syndrome is an inherited heart-rhythm disorder characterized by an increased risk of ventricular tachycardia and sudden death. Genetic testing is available. MATERIAL AND METHODS: The article is based on an anonymous family with a history of long QT syndrome, the authors experience with this patient group and a Pubmed search for literature from the period 1957 - 2007. RESULTS: An 8-year-old boy suffers syncope at a sports event, and this leads to genetic counseling and molecular genetic testing of his first-and second-degree relatives. Knowledge about genetic risk of sudden death in a family can trigger genetic testing and health preventive treatment of children, but can also have substantial psychosocial and ethical consequences for the family and for the health-care personnel involved. INTERPRETATION: Living with a genetic risk can be very emotionally challenging for the individuals and families, and "The Norwegian Act of Biotechnology in Human Medicine, etc" that regulates clinical genetic activities is extensive. An important question is whether the current Act allows communication of genetic information to persons other than the patient.