Diverse sources of normativity in open science and their implications for ethical governance.

Over the past decade, open science (OS) has emerged as a global science policy and research initiative with implications for most aspects of research, including planning, funding, publishing, evaluation, data sharing and access. As OS has gained increasing prominence, it has also faced substantial criticism. Whether it is the worries about the equality of access associated with open-access publishing or the more recent allegations of OS benefitting those who act in the private interest without giving back to OS, there are, indeed, many potential as well as actual harms that can be linked to the practice of OS. These criticisms often revolve around ethical challenges and fairness concerns, prompting the question of whether a comprehensive ethical governance framework is needed for OS. This commentary contends that owing to the heterogeneous nature of the normative foundations of OS and the inherent diversity within scientific practices, a pluralistic and deliberative approach to governance is needed.

Frontline Healthcare Professionals' Views Regarding the Impact of COVID-19 on Ethical Decision-Making: A Multicentre Mixed-Methods Study from Estonia.

BACKGROUND: The objective of the study was to investigate frontline healthcare professionals' experiences and attitudes in relation to the COVID-19 pandemic's ethical and psychosocial aspects in Estonia. There were two research foci: first, ethical decision-making related to treating patients in the context of potential medical resource scarcity, and second, other psychosocial factors for healthcare professionals pertaining to coping, role conflicts, and the availability of institutional support. METHODS: An online survey was conducted in the fall of 2020 amongst the frontline healthcare professionals working in the three most impacted hospitals; respondents were also drawn from two ambulance services. The focus of the survey was on the first wave of COVID-19 (spring 2020). A total of 215 respondents completed the quantitative survey and qualitative data were gathered from open comments. RESULTS: Over half of the surveyed healthcare professionals in Estonia expressed confidence in their roles during the pandemic. More than half cited the complex ethical aspects related to their decisions as their main source of doubt and uncertainty. In response to this uncertainty, Estonian healthcare professionals drew on their previous training and experience, the policies and guidelines of their institution, and support from their colleagues, to aid their decision-making during the pandemic. CONCLUSIONS: Although frontline healthcare professionals faced difficult decisions during the first wave of the pandemic, overall, most agreed that experiencing the pandemic reconfirmed that their work mattered greatly.

From late fatherhood to prenatal screening of monogenic disorders: evidence and ethical concerns.

BACKGROUND: With the help of ART, an advanced parental age is not considered to be a serious obstacle for reproduction anymore. However, significant health risks for future offspring hide behind the success of reproductive medicine for the treatment of reduced fertility associated with late parenthood. Although an advanced maternal age is a well-known risk factor for poor reproductive outcomes, understanding the impact of an advanced paternal age on offspring is yet to be elucidated. De novo monogenic disorders (MDs) are highly associated with late fatherhood. MDs are one of the major sources of paediatric morbidity and mortality, causing significant socioeconomic and psychological burdens to society. Although individually rare, the combined prevalence of these disorders is as high as that of chromosomal aneuploidies, indicating the increasing need for prenatal screening. With the help of advanced reproductive technologies, families with late paternity have the option of non-invasive prenatal testing (NIPT) for multiple MDs (MD-NIPT), which has a sensitivity and specificity of almost 100%. OBJECTIVE AND RATIONALE: The main aims of the current review were to examine the effect of late paternity on the origin and nature of MDs, to highlight the role of NIPT for the detection of a variety of paternal age-associated MDs, to describe clinical experiences and to reflect on the ethical concerns surrounding the topic of late paternity and MD-NIPT. SEARCH METHODS: An extensive search of peer-reviewed publications (1980-2021) in English from the PubMed and Google Scholar databases was based on key words in different combinations: late paternity, paternal age, spermatogenesis, selfish spermatogonial selection, paternal age effect, de novo mutations (DNMs), MDs, NIPT, ethics of late fatherhood, prenatal testing and paternal rights. OUTCOMES: An advanced paternal age provokes the accumulation of DNMs, which arise in continuously dividing germline cells. A subset of DNMs, owing to their effect on the rat sarcoma virus protein-mitogen-activated protein kinase signalling pathway, becomes beneficial for spermatogonia, causing selfish spermatogonial selection and outgrowth, and in some rare cases may lead to spermatocytic seminoma later in life. In the offspring, these selfish DNMs cause paternal age effect (PAE) disorders with a severe and even life-threatening phenotype. The increasing tendency for late paternity and the subsequent high risk of PAE disorders indicate an increased need for a safe and reliable detection procedure, such as MD-NIPT. The MD-NIPT approach has the capacity to provide safe screening for pregnancies at risk of PAE disorders and MDs, which constitute up to 20% of all pregnancies. The primary risks include pregnancies with a paternal age over 40 years, a previous history of an affected pregnancy/child, and/or congenital anomalies detected by routine ultrasonography. The implementation of NIPT-based screening would support the early diagnosis and management needed in cases of affected pregnancy. However, the benefits of MD-NIPT need to be balanced with the ethical challenges associated with the introduction of such an approach into routine clinical practice, namely concerns regarding reproductive autonomy, informed consent, potential disability discrimination, paternal rights and PAE-associated issues, equity and justice in accessing services, and counselling. WIDER IMPLICATIONS: Considering the increasing parental age and risks of MDs, combined NIPT for chromosomal aneuploidies and microdeletion syndromes as well as tests for MDs might become a part of routine pregnancy management in the near future. Moreover, the ethical challenges associated with the introduction of MD-NIPT into routine clinical practice need to be carefully evaluated. Furthermore, more focus and attention should be directed towards the ethics of late paternity, paternal rights and paternal genetic guilt associated with pregnancies affected with PAE MDs.

Ethical Decision-Making in Humanitarian Medicine: How Best to Prepare?

Ethical decision-making during humanitarian medical response is a topic of great moral as well as practical importance. The context of humanitarian disasters, often characterized by acute time-pressure, lack of resources, the unfamiliarity of circumstances, is stressful for medical professionals. The overall aim of this article is pragmatic, to introduce briefly the importance and context for preparing medical disaster response personnel for ethical decision-making and then to provide a discussion case and explain the particular value-reflection methodology. The focus of methodology is on providing space for the emotional and stressful aspects of ethics training for disasters.

Reproductive options for families at risk of Osteogenesis Imperfecta: a review.

BACKGROUND: Osteogenesis Imperfecta (OI) is a rare genetic disorder involving bone fragility. OI patients typically suffer from numerous fractures, skeletal deformities, shortness of stature and hearing loss. The disorder is characterised by genetic and clinical heterogeneity. Pathogenic variants in more than 20 different genes can lead to OI, and phenotypes can range from mild to lethal forms. As a genetic disorder which undoubtedly affects quality of life, OI significantly alters the reproductive confidence of families at risk. The current review describes a selection of the latest reproductive approaches which may be suitable for prospective parents faced with a risk of OI. The aim of the review is to alleviate suffering in relation to family planning around OI, by enabling prospective parents to make informed and independent decisions. MAIN BODY: The current review provides a comprehensive overview of possible reproductive options for people with OI and for unaffected carriers of OI pathogenic genetic variants. The review considers reproductive options across all phases of family planning, including pre-pregnancy, fertilisation, pregnancy, and post-pregnancy. Special attention is given to the more modern techniques of assisted reproduction, such as preconception carrier screening, preimplantation genetic testing for monogenic diseases and non-invasive prenatal testing. The review outlines the methodologies of the different reproductive approaches available to OI families and highlights their advantages and disadvantages. These are presented as a decision tree, which takes into account the autosomal dominant and autosomal recessive nature of the OI variants, and the OI-related risks of people without OI. The complex process of decision-making around OI reproductive options is also discussed from an ethical perspective. CONCLUSION: The rapid development of molecular techniques has led to the availability of a wide variety of reproductive options for prospective parents faced with a risk of OI. However, such options may raise ethical concerns in terms of methodologies, choice management and good clinical practice in reproductive care, which are yet to be fully addressed.

Can Theories of Global Justice Be Useful in Humanitarian Response?

Why is it that humanitarianism and theories of global justice seem to have relatively little engagement with each other? This article discusses some of the reasons for this being the case, and argues that instead of seeing these two fields as separate or adversarial they should be viewed as complementary. The article begins with a brief overview of humanitarianism, in order to argue for the relevance of justice in humanitarianism. The second section focuses on analyzing selected theories of justice- those of Peter Singer, John Kekes, and Thomas Pogge-through a particular lens, that of the question of responsibility for global well-being. The article concludes by arguing that theories of global justice can be beneficial for humanitarian causes, not in a comprehensive and consistent "all-or-nothing" manner, but rather on a case-by-case basis and through selective application of particular arguments.