BMC Medical Ethics最新文献

{"title":"Development, reliability, and validity of the nurses' conscientious objection attitude scale (COAS-N).","authors":"Seyhan Demir Karabulut, Şenay Gül, Eylem Gül Ateş, Zehra Göçmen Baykara","doi":"10.1186/s12910-024-01155-4","DOIUrl":"10.1186/s12910-024-01155-4","url":null,"abstract":"<p><strong>Background: </strong>Conscientious objection poses ethical dilemmas frequently encountered by nurses, allowing them to prioritize personal beliefs in caregiving. However, it may also be viewed as a stance jeopardizing patients' healthcare access. There is no measurement tool to measure conscientious objection in nurses. This study aimed to develop a measurement tool for nurses' conscientious objection attitudes.</p><p><strong>Methods: </strong>This research is a methodological study conducted with a total of 261 nurses in Turkiye. Following content validity assessments by ten experts, a 29-item draft scale was developed. Exploratory and confirmatory factor analyses examined the factor structure, and reliability was assessed via the Spearman-Brown coefficient, intraclass correlation coefficient (ICC), and Bland Altman plot. Cronbach's alpha estimated internal consistency and discrimination, which were evaluated by comparing lower and upper 27% groups.</p><p><strong>Results: </strong>The Nurses' Conscientious Objection Attitude Scale (COAS-N) comprises 29 items and three sub-dimensions (prioritizing professional values, prioritizing personal values, and requesting the right to conscientious objection). Cronbach's alpha for the entire scale is 0.81.</p><p><strong>Conclusion: </strong>Validity and reliability were established for the newly developed scale measuring nurses' conscientious objection attitudes.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"147"},"PeriodicalIF":3.0,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11662762/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142873466","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Shared care planning in people with cognitive disorders and dementia: a survey among patients and caregivers in Italy.","authors":"Corinna Porteri, Giulia Ienco, Edda Mariaelisa Turla, Mariassunta Piccinni, Patrizio Pasqualetti","doi":"10.1186/s12910-024-01150-9","DOIUrl":"10.1186/s12910-024-01150-9","url":null,"abstract":"<p><strong>Background: </strong>There is wide convergence in the positions of scientific societies, patient associations and public bodies regarding the advisability of advance care planning (ACP) in cognitive disorders and dementia to respect the specificity of the person. Nevertheless, planning in advance for dementia represents a unique challenge. In Italy, law n. 219/2017 introduced ACP for the first time at the regulatory level, under the name of shared care planning (SCP). Few surveys on the law implementation have been conducted in Italy, but none have specifically involved patients with cognitive disorders and their caregivers. To contribute filling the gap, we conducted a survey among patients and caregivers attending a memory clinic to investigate what their knowledge, attitudes and experiences were regarding SCP.</p><p><strong>Methods: </strong>We developed two semi-structured questionnaires for patients and caregivers organized into the following sections: (i) knowledge of the law; (ii) general attitude on SCP; (iii) experience about SCP; (iv) attitude about realizing a SCP; (v) advance directives. Participation in the survey was offered to consecutive patients discharged from the memory clinic during 26 target weeks and to their caregivers. The interviews were conducted on the occasion of the last scheduled visit to the facility; telephone interview was also provided. Information was collected by means of an online platform (Google Forms). Descriptive and basic inferential analysis was performed by means of SPSS (IBM). The analysis of the open-ended questions was also conducted with the support of the Voyant Tools.</p><p><strong>Results: </strong>Sixty-six patient and 65 caregiver interviews were collected. No participant reported that a doctor has ever talked to the patient about SCP. The large majority of patients (85%) and almost all caregivers (95%) agree/absolutely agree with the opportunity for patients to realize SCP. Almost all participants agree/absolutely agree with the usefulness for the patients of indicating a trusted person to act on their behalf (91% patients and 95% caregivers). Forty-three (65%) patients and 48 (74%) caregivers believe it would be good to start SCP with the patient when the time is right. Among them, 20 caregivers and 12 patients believe it is already time to talk about SCP.</p><p><strong>Conclusions: </strong>Study results showed patients' and caregivers' interest in the SCP process and, at the same time, their mixed attitude when SCP is referred specifically to themselves or their loved ones. This indicates the need to introduce the discourse on SCP into clinical practice while remaining very sensitive to the individual patient's pace and wishes, including his/her possible refusal to talk about SCP.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"145"},"PeriodicalIF":3.0,"publicationDate":"2024-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11660457/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142866269","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Decision-making and ethical dilemmas experienced by hospital physicians during the COVID-19 pandemic in the Czech Republic.","authors":"Ilona Tietzova, Radka Buzgova, Ondrej Kopecky","doi":"10.1186/s12910-024-01133-w","DOIUrl":"10.1186/s12910-024-01133-w","url":null,"abstract":"<p><strong>Background: </strong>During the COVID-19 pandemic, global healthcare systems faced unprecedented challenges, with a lack of resources and suboptimal patient care emerging as primary concerns.</p><p><strong>Methods: </strong>Our research, using a comprehensive 24-item electronic questionnaire, \"Reflections on the Provision of Healthcare during the COVID-19 Pandemic,\" delved into the experiences of 938 physicians across the Czech Republic.</p><p><strong>Results: </strong>Over fifty per cent observed a \"lower standard of care\" compared to pre-pandemic levels. A division arose among physicians regarding a decision's medical, ethical, or legal basis, with a notable gender disparity: male doctors leaned towards medical perspectives, whereas females accented the ethical perspective. Decision-making concerning health care limitations required agreement among the physicians on duty, interdisciplinary teams, or shift supervisors. Physicians reported varying degrees of patient or family participation in health care decisions. Variables such as age, pre-existing health conditions, and life expectancy influenced care decisions. Surprisingly, half of the physicians faced refusals of patients' transportation to better-equipped facilities due to resource constraints. One-third of physicians never discuss the decision about care limitation and other options with patients or their families. As a result, almost fifty per cent of the physicians rarely or never imparted information about care limitations to patients.</p><p><strong>Conclusion: </strong>The survey shed light on the profound ethical dilemmas hospital physicians face across different types of healthcare facilities during the pandemic. It uncovered the need for open dialogue and scholarly debate on resource allocation and strengthening the role of patients and their families in care decisions in future healthcare crises.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"144"},"PeriodicalIF":3.0,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11619269/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142781354","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Hematologists' perspective on advance directives, a French national cross-sectional survey - the ADORE-H study.","authors":"K Serey, A Cambriel, Adrien Pollina-Bachellerie, Jacques-Olivier Bay, Carole Bouleuc, Laure Ladrat, Jean-Pierre Lotz, Francois Philippart","doi":"10.1186/s12910-024-01146-5","DOIUrl":"10.1186/s12910-024-01146-5","url":null,"abstract":"<p><strong>Background: </strong>The onset of hematological malignancies can lead to acute and critical situations. It can also result in adverse outcome despite the significant advancements made in their therapeutic management. In this context, advance care planning and, in particular, advance directives (AD) play an essential role. However, the use of AD in patients with malignant hematological conditions remains very rare.</p><p><strong>Material & methods: </strong>The aim was to evaluate the perception of AD by hematologists. We conducted a national online survey in France. All hematologist working in a hospital setting and treating malignant hemopathies were solicited. The questionnaire covered five areas: personal perception of AD; assistance in writing AD; patient information about AD; use of ADs; and demographic data.</p><p><strong>Results: </strong>318 hematologists (33.7% of the whole population), working in 103 different centers across France participated in the study. 72.6% (n = 231) of the respondents believed that AD could be beneficial for patient's care. Only 32.7% talked about AD with their patients on a regular basis. The lack of utilization was correlated with the fear of creating anxiety for the patient (64.9%; n = 172) or for relatives (30.9%; n = 80), as well as the belief that AD were deemed inappropriate for their patients (57.8%; n = 145). 19.5% (n = 62) of responding hematologist offered their assistance to patients in writing AD. This proportion was higher in physicians who had previously worked in palliative care unit (35,6% vs. 16,8%, p = 0,0004).</p><p><strong>Conclusion: </strong>The majority of the surveyed hematologist hold a positive opinion about AD. However, only a few discuss the matter with their patients. The fear of consequences for patients and relatives, particularly anxiety, remains the primary barrier to providing information about AD.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"142"},"PeriodicalIF":3.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11600615/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142741307","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Regulating professional ethics in a context of technological change.","authors":"Tracey L Adams, Kathleen Leslie, Sophia Myles, Bruna Moraes","doi":"10.1186/s12910-024-01140-x","DOIUrl":"10.1186/s12910-024-01140-x","url":null,"abstract":"<p><strong>Background: </strong>Technological change is impacting the work of health professionals, especially with recent developments in artificial intelligence. Research has raised many ethical considerations respecting clinical applications of artificial intelligence, and it has identified a role for professional regulation in helping to guide practitioners in the ethical use of technology; however, regulation in this area has been slow to develop. This study seeks to identify the challenges that health professionals face in the context of technological change, and whether regulators' codes of ethics and guidance are sufficient to help workers navigate these changes.</p><p><strong>Methods: </strong>We conducted mixed methods research in Ontario, Canada, using qualitative content analysis of regulators' codes of ethics and practice guidance (26 regulators, 63 documents analysed), interviews with 7 representatives from 5 health profession regulatory bodies, and focus groups with 17 healthcare practitioners across 5 professions in the province. We used thematic analysis to analyse the data and answer our core research questions.</p><p><strong>Results: </strong>We find that codes of ethics focus more on general principles and managing practitioners' relationships with clients/patients; hence, it is not clear that these documents can successfully guide professional practice in a context of rapid technological change. Practitioners and regulatory body staff express ambivalence and uncertainty about regulators' roles in regulating technology use. In some instances, health professionals experience conflict between the expectations of their regulator and their employer. These gaps and conflicts leave some professionals uncertain about how to practice ethically in a digital age.</p><p><strong>Conclusions: </strong>There is a need for more guidance and regulation in this area, not only for practitioners, but with respect to the application of technology within the environments in which health professionals work.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"143"},"PeriodicalIF":3.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11603855/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142741320","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Community engagement conduct for genetics and genomics research: a qualitative study of the experiences and perspectives of key stakeholders in Uganda.","authors":"Harriet Nankya, Vincent P Alibu, Enock Matovu, Edward Wamala, John Barugahare","doi":"10.1186/s12910-024-01137-6","DOIUrl":"10.1186/s12910-024-01137-6","url":null,"abstract":"<p><strong>Background: </strong>Community engagement (CE) is one of the key strategies to optimize ethical integrity in research. However, the knowledge base on how CE should be effectively and ethically conducted, particularly for genetics and genomics research (GGR), is limited. Lessons have not been drawn from the experiences of key stakeholders in GGR, on CE, in Uganda.</p><p><strong>Aim: </strong>To analyze the experiences and perspectives of the key stakeholders (GGR researchers, lay communities, and REC members) on engaging communities in GGR, to consequently inform how communities could be ethically engaged in such research, in Uganda.</p><p><strong>Method: </strong>A cross-sectional qualitative study was conducted at; Makerere University, Uganda Virus Research Institute, and Mulago National Referral Hospital. Twenty-five GGR researchers, twenty REC members, and thirty-eight community members, participated in this study. Data were collected using in-depth interviews guides, and Focus group discussions. Data was analyzed thematically, using NVivo version 12 Plus.</p><p><strong>Study findings: </strong>Thirteen of the twenty-five GGR researchers had conducted CE in their studies, seven REC members had ever reviewed GGR protocols, and all the community respondents had ever participated in GGR. The goal for CE was reported to depend on the type of GGR as either basic or applied. Planning for CE involved; defining the community and for GGR this includes individuals not directly involved in the research but share the study gene with participants; a bigger CE budget to cover extra costs in GGR. The conduct of CE was reported to mainly occur at sample collection stage, rarely at study conception, and had not occurred at the return of results stage. Implementation of CE involved; engaging leaders first to gain access and acceptance of the research in the community; having a genetic counsellor on the CE team to handle the social issues in GGR.</p><p><strong>Conclusion: </strong>This study provides challenges and facilitators on the conduct of CE in GGR in Uganda. Measures including the building of capacity especially knowledge in both GGR and CE for all the stakeholders, and using this study findings to inform policy, regulation, and further research will potentially contribute to ethical CE in GGR in Uganda and similar research contexts.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"141"},"PeriodicalIF":3.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11600932/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142741304","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring patients' rights awareness and implementations amongst hospitalized patients in Northern Palestine: insights from a local perspective.","authors":"Anas Odeh, Nadeem Khayat, Saad Abuzahra, Amira Shaheen, Zaher Nazzal","doi":"10.1186/s12910-024-01139-4","DOIUrl":"10.1186/s12910-024-01139-4","url":null,"abstract":"<p><strong>Background and aim: </strong>Promoting ethical medical practices and preserving human rights principles require an understanding of patient rights. Studies show varying awareness levels among patients regarding their rights. This study aims to assess the level of awareness among patients in Palestine about their rights and the compliance of healthcare professionals.</p><p><strong>Methods: </strong>A cross-sectional study was conducted between November 2023 and January 2024 in the Northern West Bank cities. Data collection was conducted by three trained medical students utilizing an interviewer-administered questionnaire. The association between participant characteristics and awareness was assessed using the Chi-square test, followed by a multivariate regression analysis to control for confounding variables.</p><p><strong>Results: </strong>Of 400 patients surveyed, 47.0% had good awareness of their rights. Multivariate analysis showed that awareness was associated with patients in the age group of 18-30 years and 46-60 years, having private insurance, more prior hospitalizations, non-governmental settings, and prior charter awareness. Awareness was highest for respectful care and lowest for staff introductions. Non-governmental facilities performed better than governmental on explaining procedures, alternatives, and costs, though both settings scored highly on non-discrimination and consent.</p><p><strong>Conclusions: </strong>Our findings underscore global gaps in ensuring adequate patients' rights awareness and implementation, with over half exhibiting inadequate knowledge. Significant deficiencies exist in involving patients in decision-making, informing about procedures/costs, and providing accessible complaint mechanisms, particularly in governmental facilities. Comprehensive, culturally-appropriate initiatives involving multisectoral collaborations are crucial to drive substantive reforms translating patient-centered care principles into consistent practice worldwide.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"139"},"PeriodicalIF":3.0,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11590486/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142734862","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Parental awareness and perspectives on newborn screening in China: a questionnaire-based study.","authors":"Xiaoshan Yin, Peiyao Wang, Ziyan Cen, Zinan Yu, Qimin He, Benqing Wu, Xinwen Huang","doi":"10.1186/s12910-024-01145-6","DOIUrl":"10.1186/s12910-024-01145-6","url":null,"abstract":"<p><strong>Background: </strong>Low parental awareness and knowledge about newborn screening have been identified as a public issue. This study explored Chinese parents' self-evaluation of awareness, knowledge, and methods of receiving information about newborn screening.</p><p><strong>Methods: </strong>Using convenience sampling, we included 614 respondents who were expectant parents or parents of children aged 0-3 years. Our self-made questionnaire comprised four sections: sociodemographic characteristics, self-evaluation of awareness, detailed knowledge about newborn screening, and practical and expected methods of receiving newborn screening information.</p><p><strong>Results: </strong>We found that 72.9% of participants were classified as aware of newborn screening. However, only 14.2% of the participants received a passing score on the newborn screening detailed knowledge questions. Knowledge level about newborn screening was significantly associated with gender (P < .001), age (P < .05), education level (P < .05), residence (P < .05), family income (P < .05), and number of children (P < .05). The knowledge acquisition about newborn screening mainly came from hospital-related training (62.1%). Additionally, nearly half of the respondents (48.0%) expressed a preference for learning more about newborn screening through social media platforms, such as WeChat.</p><p><strong>Conclusions: </strong>While the majority of expectant or new parents were aware of newborn screening, only a minority had a thorough understanding of it. Various sociodemographic factors were associated with the level of parental knowledge about newborn screening. It is recommended to use hospital lectures or social media initiatives to educate parents in China.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"140"},"PeriodicalIF":3.0,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11590612/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142734863","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Views on medical assistance in dying and related arguments: a survey of doctors and nurses at a university hospital.","authors":"Svanur Sigurbjörnsson, Brynhildur K Ásgeirsdóttir, Elsa B Valsdóttir","doi":"10.1186/s12910-024-01138-5","DOIUrl":"10.1186/s12910-024-01138-5","url":null,"abstract":"<p><strong>Background: </strong>In 2021, a survey was conducted among doctors and nurses at Landspítali Iceland University Hospital (LIUH) regarding their views on medical assistance in dying (MAID) and the underlying arguments, the inclusion criteria and modality of implementation. Surveys on identically defined study groups in 1995 and 2010 were used for comparison.</p><p><strong>Methods: </strong>The survey was sent to 357 doctors and 516 nurses working at LIUH. It included seven questions and several subquestions. Participants' answers were compared by profession, age group, and specialisation status. Descriptive and inferential statistics were used.</p><p><strong>Results: </strong>A total of 135 doctors (38% response rate) and 103 nurses (20% response rate) answered the survey, representing 27% of the study group. A total of 145 (61%) participants were positive about MAID, with the most common argument being patient autonomy. The 95% margin of error for this view was ± 6.2%. Compared to 19% in 2010, support for MAID had tripled in 2021 (p < 0.05). Approximately 18% of participants did not support MAID of any kind, mostly due to arguments regarding preserving life or inconsistencies with the role of health care professionals. Finally, 19% of participants were uncertain of their views towards MAID, mostly due to the high level of complexity of the matter.</p><p><strong>Conclusion: </strong>Compared to previous surveys, a large increase in positive attitudes towards MAID was observed among this study population. The results revealed the reasons for participants' attitudes; weighing patients' dignity/autonomy against professionals' duty to \"not to kill\"/palliate and showing some differences between professions.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"137"},"PeriodicalIF":3.0,"publicationDate":"2024-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11587625/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142711832","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical issues in genomics research in persons with Alzheimer's Disease/Alzheimer's Disease-related dementia (AD/ADRD): a systematic review.","authors":"Aminu Yakubu, Isaac Adedeji, Oluchi C Maduka, Ayodele Jegede, Clement Adebamowo","doi":"10.1186/s12910-024-01141-w","DOIUrl":"10.1186/s12910-024-01141-w","url":null,"abstract":"<p><strong>Introduction: </strong>Given the growing number of Alzheimer's Disease and Alzheimer's Disease Related Dementias (AD/ADRD) genomics research projects and the vulnerabilities of study participants, it is critical to evaluate the literature on the ethical challenges in such studies to ensure high ethical standards.</p><p><strong>Methods: </strong>We conducted a systematic review of the literature on ethical issues in AD/ADRD genomics research. We searched Embase, PsycINFO, CiNAHL, Scopus, and Ovid Medline for empirical and normative papers published in peer-reviewed journals on the ethical issues involved in conducting genomics research among persons with AD/ADRD. We used ethical principles from an existing framework as a priori codes to categorize the ethical issues and adapted another framework of Dementia Research Ethical Issues (DREI) as subcategories for our synthesis. We used the 2021 PRISMA guidelines to guide our study.</p><p><strong>Results: </strong>We screened 5,509 papers and included 27 of these papers in the systematic review after deduplication, title, and full-text review. The papers contained 109 ethical issues that were mapped against 42 out of 75 relevant DREIs. The highest number of DREIs were mapped to \"respect for persons and communities\", \"favorable risk-benefit ratio\", \"informed consent\" and \"scientific validity\". The least mapped principles to the DREIs were \"fair participant selection\", \"independent review\", \"social value\", and \"collaborative partnership\".</p><p><strong>Conclusion: </strong>Our review showed that there is a dearth of literature on the ethical principles of \"fair participant selection\", \"independent review\", \"social value\" and \"collaborative partnership\" in genomics research on AD/ADRDs. It is difficult to draw firm conclusions from the distribution of attention paid to specific principles because these may only reflect the concerns of AD/ADRD genomics research ethicists in high-income countries. There is need for more research on the ethics of AD/ADRD genomics research in low and middle-income countries for a more balanced account of the important ethical considerations in this field.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"138"},"PeriodicalIF":3.0,"publicationDate":"2024-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11587778/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142717422","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}