The ethics of genome editing in non-human animals: a systematic review of reasons reported in the academic literature.
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SUBMITTER: de Graeff N
PROVIDER: S-EPMC6452271 | biostudies-literature | 2019 May
REPOSITORIES: biostudies-literature
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Project description:Study questionWhat are the reasons for or against the future clinical application of germline genome modification (GGM)?Summary answerA total of 169 reasons were identified, including 90 reasons for and 79 reasons against future clinical application of GGM.What is known alreadyGGM is still unsafe and insufficiently effective for clinical purposes. However, the progress made using Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR)- CRISPR-associated system (Cas) has led scientists to expect to overcome the technical hurdles in the foreseeable future. This has invited a debate on the socio-ethical and legal implications and acceptability of clinical applications of GGM. However, an overview of the reasons presented in this debate is missing.Study design, size, durationMEDLINE was systematically searched for articles published between January 2011 and June 2016. Articles covering reasons for or against clinical application of intentional modification of the nuclear DNA of the germline were included.Participants/materials, setting, methodsTwo researchers independently extracted the reported reasons from the articles and grouped them into categories through content analysis.Main results and the role of chanceThe systematic search yielded 1179 articles and 180 articles were included. Most papers were written by professionals in ethics, (science) journalism and biomedical sciences. Overall, 169 reasons were identified, including 90 reasons for, and 79 reasons against future clinical application of GGM. None of the included articles mentioned more than 60/169 reasons. The reasons could be categorized into: (i) quality of life of affected individuals; (ii) safety; (iii) effectiveness; (iv) existence of a clinical need or alternative; (v) costs; (vi) homo sapiens as a species (i.e. relating to effects on our species); (vii) social justice; (viii) potential for misuse; (ix) special interests exercising influence; (x) parental rights and duties; (xi) comparability to acceptable processes; (xii) rights of the unborn child; and (xiii) human life and dignity. Considerations relating to the implementation processes and regulation were reported.Limitations, reasons for cautionWe cannot ensure completeness as reasons may have been omitted in the reviewed literature and our search was limited to MEDLINE and a 5-year time period.Wider implications of the findingsBesides needing (pre)clinical studies on safety and effectiveness, authors call for a sound pre-implementation process. This overview of reasons may assist a thorough evaluation of the responsible introduction of GGM.Study funding/competing interest(s)University of Amsterdam, Alliance Grant of the Amsterdam Reproduction and Development Research Institute (I.D.), and Clinical Center, Department of Bioethics, National Institutes of Health Intramural Research Program (S.H.). There are no competing interests.
| S-EPMC6454467 | biostudies-literature
Project description:Background Coastal areas in Guinea-Bissau and elsewhere in West Africa are bordered by mangrove forests. In several of these places, swaths of mangrove forest have been removed and the landscape has been technologically adapted for the production of mangrove rice–a regionally important staple. However, the effects of global warming, in particular sea-level rise, pose challenges to these socioecological environments. In this context, knowledge appears as an important resource and knowing what knowledge has been produced and which perspectives have guided that production may inform future responses to climate change. We have developed a systematic literature review protocol focusing on the main question: “How have mangrove forest and mangrove rice spaces been represented in the literature on Guinea-Bissau?” The main hypothesis is that although they occupy contiguous, interrelated and interactant spaces in coastal environments, mangrove forests and mangrove rice have been studied and analyzed independently in the literature. Methods This is a protocol for conducting a systematic review that will include academic and non-academic literature in Portuguese, English and French. The academic literature will be retrieved from both Web of Science and Scopus using Boolean expressions. The non-academic literature will be accessed from relevant institutions, specialized libraries, and reference lists of previously selected items. Data extraction will follow a standard procedure based on an information sheet. Our analysis will be both qualitative (inductive and deductive coding, content analysis) and quantitative (word clouds, descriptive statistics and statistical testing). Discussion This systematic review will provide information about the conceptual framework that has been produced through research, policymaking, and conservation and development programs in the management of coastal areas. This study will identify the limitations of previous approaches and contribute to both future research and strategies for planning adaptation to climate change. Finally, the outputs will add to broader debates about people-nature coexistence and climate change adaptation and mitigation.
| S-EPMC10101492 | biostudies-literature
Project description:BackgroundRehabilitation plays an important role in addressing the many challenges of living with cancer, but a large proportion of people with cancer do not participate in available cancer rehabilitation. Hence, reasons for non-participation in cancer rehabilitation need to be explored.ObjectiveThe present study undertakes a scoping review of research examining reasons for non-participation in cancer rehabilitation among people with cancer.DesignA systematic search was conducted in PubMed, Scopus and CINAHL for articles published until July 2023. Included studies were hand searched for relevant references and citations.Eligibility criteriaMethod: Studies with qualitative, quantitative or mixed-method design.PopulationStudies targeting adults (> 18) living with cancer, not participating in rehabilitation. Program type: The review included all studies defining program as rehabilitation but excluded clinical trials.OutcomeStudies examining reasons for non-participation in available rehabilitation.Data extractionThe extracted data included author(s)/year of publication, aim, population, information, rehabilitation type and main reasons for non-participation.ResultsA total of nine studies were included (n = 3 quantitative, n = 2 qualitative, n = 4 mixed methods). Reasons for non-participation included physical, psychosocial and practical aspects. The main reason across studies was 'no need for public support' related to receiving sufficient support from family and friends. All studies focused on individual reasons, and structural conditions were rarely present.ConclusionResearch within this field is sparse. Future research should explore how individual reasons for non-participation relate to structural conditions, especially among people in socially disadvantaged positions living with cancer.
| S-EPMC11093823 | biostudies-literature
Project description:This study explored rates of non-attendance (i.e., non-initiation, inconsistent attendance, early discontinuation) in cognitive processing therapy (CPT) and other posttraumatic stress disorder (PTSD) focused individual and group psychotherapies (i.e., interventions with at least some PTSD and/or trauma-related content) and characterized veterans' self-reported reasons for non-attendance in these treatments. Baseline and 6-month follow-up data from the Telemedicine Outreach for PTSD study, a pragmatic randomized effectiveness trial conducted in 11 Veterans Health Administration community-based outpatient clinics, was examined (N = 265 veterans). Over 90% of veterans with a scheduled psychotherapy appointment attended at least one appointment by 6-month follow-up. Self-reported treatment completion was higher for veterans attending individual CPT (25%) than for those attending PTSD-focused individual (4.4%) and group psychotherapy (15.5%). However, rates of inconsistent attendance (13.3%) and early discontinuation (18.3%) were also higher in veterans attending CPT when compared to other forms of PTSD-focused psychotherapy (inconsistent attendance-individual: 2.2%, group: 6.9%; early discontinuation-individual: 14.6%; group: 10.3%). Issues with scheduling appointments was one of the most frequently reported reasons for non-attendance across treatments (> 20%). Logistical barriers, including transportation (CPT), therapy taking too much time (PTSD-focused individual psychotherapy) and not being able to afford counseling (PTSD-focused group psychotherapy), were also commonly cited (i.e., > 15%). Those scheduled to attend CPT (26%) or PTSD-focused individual psychotherapy (11%) also cited treatment efficacy concerns as a reason for non-attendance. Findings suggest logistical barriers, particularly scheduling convenient appointments, and beliefs about treatment may be important to address when engaging veterans in psychotherapy for PTSD. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
| S-EPMC7147996 | biostudies-literature
Project description:Background:Research around humanitarian crises, aid delivery, and the impact of these crises on health and well-being has expanded dramatically. Ethical issues around these topics have recently received more attention. We conducted a systematic literature review to synthesize the lessons learned regarding the ethics of research in humanitarian crises. Methods:We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines to identify articles regarding the ethics of research in humanitarian contexts between January 1, 1997 and September 1, 2019. We analyzed the articles to extract key themes and develop an agenda for future research. Results:We identified 52 articles that matched our inclusion criteria. We categorized the article data into five categories of analysis: 32 were expert statements, 18 were case studies, 11 contained original research, eight were literature reviews and three were book chapters. All included articles were published in English. Using a step-wise qualitative analysis, we identified 10 major themes that encompassed these concepts and points. These major themes were: ethics review process (21 articles, [40.38%]); community engagement (15 articles [28.85%]); the dual imperative, or necessity that research be both academically sound and policy driven, clinical trials in the humanitarian setting (13 articles for each, [25.0%)]; informed consent (10 articles [19.23%]); cultural considerations (6 articles, [11.54%]); risks to researchers (5 articles, [9.62%]); child participation (4 articles [7.69%]); and finally mental health, and data ownership (2 articles for each [3.85%]). Conclusions:Interest in the ethics of studying humanitarian crises has been dramatically increasing in recent years. While key concepts within all research settings such as beneficence, justice and respect for persons are crucially relevant, there are considerations unique to the humanitarian context. The particular vulnerabilities of conflict-affected populations, the contextual challenges of working in humanitarian settings, and the need for ensuring strong community engagement at all levels make this area of research particularly challenging. Humanitarian crises are prevalent throughout the globe, and studying them with the utmost ethical forethought is critical to maintaining sound research principles and ethical standards.
| S-EPMC7245798 | biostudies-literature
Project description:IntroductionPublic health investigations, including research, in refugee populations are necessary to inform evidence-based interventions and care. The unique challenges refugees face (displacement, limited political protections, economic hardship) can make them especially vulnerable to harm, burden, or undue influence. Acute survival needs, fear of stigma or persecution, and history of trauma may present challenges to ensuring meaningful informed consent and establishing trust. We examined the recently published literature to understand the application of ethics principles in investigations involving refugees.MethodsWe conducted a preliminary review of refugee health literature (research and non-research data collections) published from 2015 through 2018 available in PubMed. Article inclusion criteria were: participants were refugees, topic was health-related, and methods used primary data collection. Information regarding type of investigation, methods, and reported ethics considerations was abstracted.ResultsWe examined 288 articles. Results indicated 33% of investigations were conducted before resettlement, during the displacement period (68% of these were in refugee camps). Common topics included mental health (48%) and healthcare access (8%). The majority (87%) of investigations obtained consent. Incentives were provided less frequently (23%). Most authors discussed the ways in which community stakeholders were engaged (91%), yet few noted whether refugee representatives had an opportunity to review investigational protocols (8%). Cultural considerations were generally limited to gender and religious norms, and 13% mentioned providing some form of post-investigation support.ConclusionsOur analysis is a preliminary assessment of the application of ethics principles reported within the recently published refugee health literature. From this analysis, we have proposed a list of best practices, which include stakeholder engagement, respect for cultural norms, and post-study support. Investigations conducted among refugees require additional diligence to ensure respect for and welfare of the participants. Development of a refugee-specific ethics framework with ethics and refugee health experts that addresses the need for stakeholder involvement, appropriate incentive use, protocol review, and considerations of cultural practices may help guide future investigations in this population.
| S-EPMC7305588 | biostudies-literature
Project description:BackgroundThe COVID-19 pandemic has increased the importance of the deployment of digital detection surveillance systems to support early warning and monitoring of infectious diseases. These opportunities create a "double-edge sword," as the ethical governance of such approaches often lags behind technological achievements.ObjectiveThe aim was to investigate ethical issues identified from utilizing artificial intelligence-augmented surveillance or early warning systems to monitor and detect common or novel infectious disease outbreaks.MethodsIn a number of databases, we searched relevant articles that addressed ethical issues of using artificial intelligence, digital surveillance systems, early warning systems, and/or big data analytics technology for detecting, monitoring, or tracing infectious diseases according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, and further identified and analyzed them with a theoretical framework.ResultsThis systematic review identified 29 articles presented in 6 major themes clustered under individual, organizational, and societal levels, including awareness of implementing digital surveillance, digital integrity, trust, privacy and confidentiality, civil rights, and governance. While these measures were understandable during a pandemic, the public had concerns about receiving inadequate information; unclear governance frameworks; and lack of privacy protection, data integrity, and autonomy when utilizing infectious disease digital surveillance. The barriers to engagement could widen existing health care disparities or digital divides by underrepresenting vulnerable and at-risk populations, and patients' highly sensitive data, such as their movements and contacts, could be exposed to outside sources, impinging significantly upon basic human and civil rights.ConclusionsOur findings inform ethical considerations for service delivery models for medical practitioners and policymakers involved in the use of digital surveillance for infectious disease spread, and provide a basis for a global governance structure.Trial registrationPROSPERO CRD42021259180; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=259180.
| S-EPMC8530254 | biostudies-literature
Project description:BackgroundVulnerability is a key concept in traditional and contemporary bioethics. In the philosophical literature, vulnerability is understood not only to be an ontological condition of humanity, but also to be a consequence of contingent factors. Within bioethics debates, vulnerable populations are defined in relation to compromised capacity to consent, increased susceptibility to harm, and/or exploitation. Although vulnerability has historically been associated with older adults, to date, no comprehensive or systematic work exists on the meaning of their vulnerability. To fill this gap, we analysed the literature on aged care for the meaning, foundations, and uses of vulnerability as an ethical concept.MethodsUsing PRISMA guidelines, we conducted a systematic review of argument-based ethics literature in four major databases: PubMed, Embase®, Web of Science™, and Philosopher's Index. These covered biomedical, philosophy, bioethical, and anthropological literature. Titles, abstracts, and full texts of identified papers were screened for relevance. The snowball technique and citation tracking were used to identify relevant publications. Data analysis and synthesis followed the preparatory steps of the coding process detailed in the QUAGOL methodology.ResultsThirty-eight publications met our criteria and were included. Publication dates ranged from 1984 to 2020, with 17 publications appearing between 2015 and 2020. Publications originated from all five major continents, as indicated by the affiliation of the first author. Our analyses revealed that the concept of vulnerability could be distinguished in terms of basic human and situational vulnerability. Six dimensions of older adults' vulnerability were identified: physical; psychological; relational/interpersonal; moral; sociocultural, political, and economic; and existential/spiritual. This analysis suggested three ways to relate to older adults' vulnerability: understanding older adults' vulnerability, taking care of vulnerable older adults, and intervening through socio-political-economic measures.ConclusionsThe way in which vulnerability was conceptualised in the included publications overlaps with distinctions used within contemporary bioethics literature. Dimensions of aged care vulnerability map onto defining features of humans, giving weight to the claim that vulnerability represents an inherent characteristic of humans. Vulnerability is mostly a value-laden concept, endowed with positive and negative connotations. Most publications focused on and promoted aged care, strengthening the idea that care is a defining practice of being human.
| S-EPMC9379886 | biostudies-literature
Project description:Grey literature encompasses documents not published in academic journals or books. Some grey literature has substantial societal importance, such as medical guidelines, government analyses and pressure group reports. Academic research cited in such documents may therefore have had indirect societal impact, such as in policy making, clinical practice or legislation. Identifying citations to academic research from grey literature may therefore help assess its societal impacts. This is difficult, however, due to the variety of document and referencing formats used in grey literature, even from a single organisation. In response, this study introduces and tests a semi-automatic method to match academic journal articles with unstandardised grey literature cited references. For this, the metadata (lead author last name, title, year) of 2.45 million UK Russell Group university outputs was matched against a 100-document sample of UK government grey literature to assess the accuracy of 21 matching heuristics. The optimal method (lead author last name and title in either order, maximum of 200 characters apart) is sufficiently accurate and scalable to make the task of matching research outputs to grey literature references feasible. The method was then applied to 3347 government publications, showing approximately 23% of UK government grey literature in this study contained at least one reference to UK Russell Group university output, and of this grey literature, an average of 3.79 references were present per document. The applied method also shows that economics and environmental science academic research is most cited between 2010 and 2018.Supplementary informationThe online version contains supplementary material available at 10.1007/s11192-022-04408-4.
| S-EPMC9223253 | biostudies-literature
Project description:From the conception of HTA in the 1970s it has been argued that addressing ethical issues is an element of HTA, and many methods for integrating ethics in HTA have become available. However, despite almost 40 years with repeated intentions, only few HTA reports include ethical analysis. Why is this so? How come, ethics is a constituent part of HTA, there are many methods available, but ethics is rarely part of practical HTA work? This is the key question of this article and several reasons why ethics is not a part of HTA are identified. A) Ethicists are professional strangers in HTA. B) A common agreed methodology for integrating ethics is lacking. Ethics methodology appears to be C) deficient, D) insufficient, or E) unsuitable. F) Integrating ethics in HTA is neither efficient nor needed for successful HTA. G) Most moral issues are general, and are not specific to a given technology. H) All relevant ethical issues can be handled within other frameworks, e.g., within economics. I) Ethics can undermine or burst the foundation of HTA. Hence, there are many reasons why ethics is not an integrated part of HTA so many years after identifying ethics as constitutive to HTA. These reasons may all explain why it is so, but on closer scrutiny, they do not work as compelling arguments for not addressing ethical issues in HTA. Hence, the identified reasons may work well as explanations, but not as justifications. In order to move on from a situation of failure we can: Exclude ethics from definitions of HTA, and as a consequence, establish a separate kind of evaluation (Health Technology Evaluation - HTE). Take the existing definition seriously and actually integrate ethics in the performance of HTA practice. Amend, expand or change HTA so that ethics is more genuinely incorporated. Which of these options to choose is open for discussion, but we need to move away from a situation where we have a definition of HTA which does not correspond with HTA practice.
| S-EPMC4260057 | biostudies-other