Ethics of Procuring and Using Organs or Tissue from Infants and Newborns for Transplantation, Research, or Commercial Purposes: Protocol for a Bioethics Scoping Review.
Since the inception of transplantation, it has been crucial to ensure that organ or tissue donations are made with valid informed consent to avoid concerns about coercion or exploitation. This issue is particularly challenging when it comes to infants and younger children, insofar as they are unable to provide consent. Despite their vulnerability, infants' organs and tissues are considered valuable for biomedical purposes due to their size and unique properties. This raises questions about the conditions under which it is permissible to remove and use these body parts for transplantation, research, or commercial purposes. The aim of this protocol is to establish a foundation for a scoping review that will identify, clarify, and categorise the main ethical arguments regarding the permissibility of removing and using organs or tissues from infants. The scoping review will follow the methodology outlined by the Joanna Briggs Institute (JBI), consisting of five stages: (1) identifying the research question, (2) developing the search strategy, (3) setting inclusion criteria, (4) extracting data, and (5) presenting and analysing the results. We will include both published and unpublished materials that explicitly discuss the ethical arguments related to the procurement and use of infant organs or tissues in the biomedical context. The search will cover various databases, including the National Library of Medicine, Web of Science, EBSCO, and others, as well as grey literature sources. Two raters will independently assess the eligibility of articles, and data from eligible studies will be extracted using a standardised form. The extracted data will then be analysed descriptively through qualitative content analysis.
There has been debate about how to respect the rights and interests of organ and tissue donors since the beginning of transplantation practice, given the moral risks involved in procuring parts of their bodies and using them for transplantation or research. A major concern has been to ensure that, at a minimum, donation of organs or other bodily tissues for transplantation or research is done under conditions of valid informed consent, so as to avoid coercion or exploitation among other moral harms. In the case of infants and younger children, however, this concern poses special difficulties insofar as infants and younger children are deemed incapable of providing valid consent. Due to their diminutive size and other distinctive properties, infants' organs and tissues are seen as valuable for biomedical purposes. Yet, the heightened vulnerability of infants raises questions about when and whether it is ever permissible to remove these body parts or use them in research or for other purposes. The aim of this protocol is to form the basis of a systematic scoping review to identify, clarify, and systematise the main ethical arguments for and against the permissibility of removing and using infant or newborn (hereafter, "infant") organs or tissues in the biomedical context (i.e. for transplantation, research, or commercial purposes).
Our scoping review will broadly follow the well-established methodology outlined by the Joanna Briggs Institute ( Peters et al., 2020). We will follow a five-stage review process: (1) identification of the research question, (2) development of the search strategy, (3) inclusion criteria, (4) data extraction, and (5) presentation and analysis of the results. Published and unpublished bibliographic material (including reports, dissertations, book chapters, etc.) will be considered based on the following inclusion criteria: the presence of explicit (bio)ethical arguments or reasons (concept) for or against the procurement and use of organs or tissues from infants, defined as a child from birth until 1 year old (population), in the biomedical domain, including transplantation, research, and commercial development (context). We will search for relevant studies in the National Library of Medicine (including PubMed and MEDLINE), Virtual Health Library, Web of Science, Google Scholar, EBSCO, Google Scholar, PhilPapers, The Bioethics Literature Database (BELIT), EthxWeb as well as grey literature sources (e.g., Google, BASE, OpenGrey, and WorldCat) and the reference lists of key studies to identify studies suitable for inclusion. A three-stage search strategy will be used to determine the eligibility of articles, as recommended by the JBI methodological guidelines. We will exclude sources if (a) the full text is not accessible, (b) the main text is in a language other than English, or (c) the focus is exclusively on scientific, legal, or religious/theological arguments. All articles will be independently assessed for eligibility between two raters (MB & XL); data from eligible articles will be extracted and charted using a standardised data extraction form. The extracted data will be analysed descriptively using basic qualitative content analysis.
Ethical review is not required as scoping reviews are a form of secondary data analysis that synthesise data from publicly available sources. Our dissemination strategy includes peer review publication, presentation at conferences, and outreach to relevant stakeholders.
The results will be reported according to the PRISMA-ScR guidelines. An overview of the general data from the included studies will be presented in the form of graphs or tables showing the distribution of studies by year or period of publication, country of origin, and key ethical arguments. These results will be accompanied by a narrative summary describing how each included study or article relates to the aims of this review. Research gaps will be identified and limitations of the review will also be highlighted.
A paper summarising the findings from this review will be published in a peer-reviewed journal. In addition, a synthesis of the key findings will be disseminated to biomedical settings (e.g., conferences or workshops, potentially including ones linked to university hospitals) in the UK, USA, Türkiye, and Singapore. They will also be shared with the academic community and policy makers involved in the organ procurement organisations (OPO), which will potentially consider our recommendations in their decision-making processes regarding infant tissue/organ donation practice in these countries.
The use of a rigorous, well-established methodological framework will ensure the production of a high-quality scoping review that will contribute to the bioethics literature.A comprehensive search of disciplinary and cross-disciplinary databases will be undertaken to ensure coverage of all possible sources that meet the inclusion criteria for the review.This review will focus exclusively on infant tissue/organ procurement/use in biomedical contexts, providing a comprehensive and reliable source of ethical arguments for future debates on this sensitive topic.The review will be limited to articles published in English, which increases the risk of missing relevant sources published in other languages.The review will be limited to articles for which the full text is available, which increases the risk of missing relevant sources that otherwise may have been included in the scoping review had the full text been accessible.
Barış M
，Lim X
，T Almonte M
，Shaw D
，Brierley J
，Porsdam Mann S
，Nguyen T
，Menikoff J
，Wilkinson D
，Savulescu J
，Earp BD
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The experiences of occupational therapists supporting children with self-regulation needs: A qualitative descriptive study.
Occupational therapists support children with self-regulation needs to engage in meaningful occupations at home, school, and in the community. However, little is known about how Australian practitioners perceive their role working with children with self-regulation needs in the Australian healthcare context. Therefore, we explored the contemporary practice experiences of Australian occupational therapists working with children 4-12 years referred for self-regulation support, to better understand elements constituting efficacious service delivery to enhance occupational engagement.
A qualitative descriptive design, underpinned by constructivism and relativism, was implemented to address the research aim. Occupational therapists were recruited online to participate in audio-recorded focus groups and interviews. The audio recordings were anonymised, transcribed verbatim, and analysed through reflexive thematic analysis.
No consumers were involved in the study design or analysis.
Four themes were generated, encapsulating the experience of 13 occupational therapists working with children with self-regulation needs: (1) navigating the complexities of self-regulation, (2) intervening to support the child and surrounding systems, (3) bringing the occupational therapy perspective to the self-regulation puzzle, and (4) working within an evolving practice context. Themes 1-3 describe specific processes that all occurred within the context of Theme 4. Overall, participants detailed successful practice to support children with self-regulation needs to participate in meaningful occupations that required person-centredness, collaboration, coaching, and adaptability of therapists responding to different stakeholder demands.
Self-regulation is a complex area of practice, and occupational therapists have a key role in supporting occupational engagement by balancing the child's needs with those of family, other stakeholders, and funding bodies. Findings support occupational therapists and decision-makers advocating for the unique role of occupational therapy in supporting self-regulation in childhood as part of a collaborative, multi-disciplinary approach. Specific consideration must also be given to ways that current funding schemes in Australia enable occupational therapy services for children with self-regulation needs.
Controlling emotions and behaviours is sometimes called 'self-regulation'. Some children find this hard and need help from an occupational therapist, who knows a lot about the body and the systems within it. A lot of occupational therapists in Australia help children with their self-regulation. There is not much known about how these therapists see their role in working with these children. We wanted to understand what it is like for occupational therapists who help children, between 4 and 12 years old, with their self-regulation. We interviewed 13 occupational therapists from across Australia and analysed what they said. The data showed four main points: (1) understanding the challenges of self-regulation, (2) helping the child and their environment, (3) using an occupational therapy approach to solve self-regulation issues, and (4) working in a changing practice environment. The therapists described how important it is to focus on the child, work together with many people like caregivers and teachers, and being flexible. They talked about how they balance the needs of the child, family, and funding bodies, which could sometimes be tricky. The study shows the things that therapists are doing when working with children who need help with their self-regulation and the things that therapists find hard working in this space. The results of the study can be used by people who advocate for services that help children and by people who make decisions about Australia's healthcare. One way the study can be used is to think about how current funding schemes do or do not allow different people and professions to work together to support children's self-regulation. Even though there were some limitations, such as a low response rate due to the stress of the COVID-19 pandemic, we did interview therapists from different parts of Australia who work in different settings to each other.
Philpott-Robinson K
，Haracz K
，Blackwell D
，Mallise C
，Leonard C
，Lane A
，Wales K
... -
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ResearchGate
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