AJOB Empirical Bioethics最新文献

{"title":"Should HIV Vaccines Be Made Available at No or Subsidized Cost? A Qualitative Inquiry of HIV Vaccine Trial Stakeholders in Tanzania.","authors":"Godwin Pancras, Mangi Ezekiel, Erasto Mbugi, Jon F Merz","doi":"10.1080/23294515.2023.2274599","DOIUrl":"10.1080/23294515.2023.2274599","url":null,"abstract":"<p><strong>Background: </strong>The world has come closer than ever to discovering a viable HIV vaccine. However, it remains less certain whether HIV vaccines should be made available to participants and communities in which trials are run no or subsidized cost. Hence the essence of this inquiry.</p><p><strong>Methodology: </strong>This is a case study design using in-depth interviews (IDI) and focus group discussions (FGD) with researchers of HIV vaccine trials, institutional review board (IRB) members, HIV advocates, a policy maker, and members of community advisory board (CAB) in Tanzania. Participants were purposively selected and data thematically analyzed using MAXQDA software.</p><p><strong>Results: </strong>Hosting a vaccine trial and the financial incapacity of individuals at increased risk of HIV were among the reasons in favor of free access to HIV vaccines. In contrast, the view that vaccines should be provided at a subsidized cost was related to high costs of vaccine development, financial return expectations by investors, and the fear of labeling the free vaccine as less important. Moreover, apart from governments and international organizations, well-off individuals could share the cost burden.</p><p><strong>Conclusion: </strong>Stakeholders engaging in active discussion about sharing the viable vaccine ought to take the aforementioned concerns into account and ensure unhindered access to individuals and host communities in Tanzania and beyond.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"206-213"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11052918/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"54231478","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Procedural Dimensions of Religious Exemptions to Covid-19 Vaccine Mandates: Promoting Clarity, Fairness, and Transparency in Applications.","authors":"Hajung Lee","doi":"10.1080/23294515.2024.2336901","DOIUrl":"https://doi.org/10.1080/23294515.2024.2336901","url":null,"abstract":"This study examines the procedural ethical considerations surrounding religious exemptions to Covid vaccine mandates, specifically focusing on immigrant healthcare personnel (HCP) and HCPs of color. It emphasizes communication issues with applicants by investigating exemption applications and their accompanying guidelines. While there is extensive literature on the ethical implications of religious exemptions, a notable gap remains in addressing the procedural aspects of religious exemption applications and their reviewing processes. The study scrutinized religious exemption application forms and accompanying guidelines from 32 selected non-teaching and teaching hospitals for the years 2022-2023. The findings highlight significant variability in exemption application criteria and processes across institutions. Importantly, many application forms lacked comprehensive procedural information, which may result in subjective evaluations and potential misinterpretations of non-Western and non-mainstream religious beliefs, especially those of immigrant HCPs and HCPs of color. The study proposes various strategies to advocate for more equitable and transparent procedures, underlining the significance of diversity, equity, and inclusion in the religious exemption review process for vaccine mandates.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"10 8","pages":"1-16"},"PeriodicalIF":0.0,"publicationDate":"2024-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140652558","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Views of Genetic Testing for Autism Among Autism Self-Advocates: A Qualitative Study.","authors":"R. Klitzman, Ekaterina Bezborodko, Wendy K. Chung, Paul S. Appelbaum","doi":"10.1080/23294515.2024.2336903","DOIUrl":"https://doi.org/10.1080/23294515.2024.2336903","url":null,"abstract":"BACKGROUND\u0000Autism self-advocates' views regarding genetic tests for autism are important, but critical questions about their perspectives arise.\u0000\u0000\u0000METHODS\u0000We interviewed 11 autism self-advocates, recruited through autism self-advocacy websites, for 1 h each.\u0000\u0000\u0000RESULTS\u0000Interviewees viewed genetic testing and its potential pros and cons through the lens of their own indiviudal perceived challenges, needs and struggles, especially concerning stigma and discrimination, lack of accommodations and misunderstandings from society about autism, their particular needs for services, and being blamed by others and by themselves for autistic traits. Their views of genetic testing tended not to be binary, but rather depended on how the genetic test results would be used. Interviewees perceived pros of genetic testing both in general and with regard to themselves (e.g., by providing \"scientific proof\" of autism as a diagnosis and possibly increasing availability of services). But they also perceived disadvantages and limitations of testing (e.g., possible eugenic applications). Participants distinguished between what they felt would be best for themselves and for the autistic community as a whole. When asked if they would undergo testing for themselves, if offered, interviewees added several considerations (e.g., undergoing testing because they support science in general). Interviewees were divided whether a genetic diagnosis would or should reduce self-blame, and several were wary of testing unless treatment, prevention or societal attitudes changed. Weighing these competing pros and cons could be difficult.\u0000\u0000\u0000CONCLUSIONS\u0000This study, the first to use in-depth qualitative interviews to assess views of autism self-advocates regarding genetic testing, highlights key complexities. Respondents felt that such testing is neither wholly good or bad in itself, but rather may be acceptable depending on how it is used, and should be employed in beneficial, not harmful ways. These findings have important implications for practice, education of multiple stakeholders, research, and policy.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"124 27","pages":"1-18"},"PeriodicalIF":0.0,"publicationDate":"2024-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140679454","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Moral Engagement and Disengagement in Health Care AI Development.","authors":"A. Nichol, Meghan Halley, Carole A Federico, Mildred K. Cho, Pamela L Sankar","doi":"10.1080/23294515.2024.2336906","DOIUrl":"https://doi.org/10.1080/23294515.2024.2336906","url":null,"abstract":"BACKGROUND\u0000Machine learning (ML) is utilized increasingly in health care, and can pose harms to patients, clinicians, health systems, and the public. In response, regulators have proposed an approach that would shift more responsibility to ML developers for mitigating potential harms. To be effective, this approach requires ML developers to recognize, accept, and act on responsibility for mitigating harms. However, little is known regarding the perspectives of developers themselves regarding their obligations to mitigate harms.\u0000\u0000\u0000METHODS\u0000We conducted 40 semi-structured interviews with developers of ML predictive analytics applications for health care in the United States.\u0000\u0000\u0000RESULTS\u0000Participants varied widely in their perspectives on personal responsibility and included examples of both moral engagement and disengagement, albeit in a variety of forms. While most (70%) of participants made a statement indicative of moral engagement, most of these statements reflected an awareness of moral issues, while only a subset of these included additional elements of engagement such as recognizing responsibility, alignment with personal values, addressing conflicts of interests, and opportunities for action. Further, we identified eight distinct categories of moral disengagement reflecting efforts to minimize potential harms or deflect personal responsibility for preventing or mitigating harms.\u0000\u0000\u0000CONCLUSIONS\u0000These findings suggest possible facilitators and barriers to the development of ethical ML that could act by encouraging moral engagement or discouraging moral disengagement. Regulatory approaches that depend on the ability of ML developers to recognize, accept, and act on responsibility for mitigating harms might have limited success without education and guidance for ML developers about the extent of their responsibilities and how to implement them.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"244 6","pages":"1-10"},"PeriodicalIF":0.0,"publicationDate":"2024-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140730616","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Public Perspectives on Investigative Genetic Genealogy: Findings from a National Focus Group Study.","authors":"Jacklyn Dahlquist, Jill O. Robinson, Amira Daoud, Whitney Bash-Brooks, Amy L McGuire, Christi J. Guerrini, Stephanie M. Fullerton","doi":"10.1080/23294515.2024.2336904","DOIUrl":"https://doi.org/10.1080/23294515.2024.2336904","url":null,"abstract":"BACKGROUND\u0000Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes.\u0000\u0000\u0000METHODS\u0000We conducted eight focus groups with members of the public (N = 72), sampled from four geographically diverse US regions, to explore general attitudes and perspectives regarding aspects of IGG practices, applications, and policies. Five major topics were explored in each focus group: when IGG should be used; who should perform IGG; how to approach consent for genetic database users; what systems of oversight should govern IGG practitioners; and whether to notify database users if their data are involved in law enforcement (LE) matching.\u0000\u0000\u0000RESULTS\u0000Participants were supportive of IGG in most scenarios, especially for cold and violent cases. The favorable attitudes toward IGG were, however, tempered by distrust of law enforcement among some participants. All participants agreed that databases must inform users if IGG is allowed, but they did not agree on how individual database users should be allowed to opt out or whether to notify them if their data are involved in specific investigations. All participants agreed that IGG should be subject to some prescriptive guidelines, regulations, or accountability mechanisms.\u0000\u0000\u0000CONCLUSIONS\u0000These findings suggest broad public support for IGG, and interest in developing systems of accountability for its practice. Our study provides useful insight for policy makers, genomic database stewards, law enforcement, and other stakeholders in IGG's practice, and suggests multiple directions for future research.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"192 S538","pages":"1-11"},"PeriodicalIF":0.0,"publicationDate":"2024-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140730757","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Gap in Attitudes Toward Withholding and Withdrawing Life-Sustaining Treatment Between Japanese Physicians and Citizens.","authors":"Yoshiyuki Takimoto, Tadanori Nabeshima","doi":"10.1080/23294515.2024.2336907","DOIUrl":"https://doi.org/10.1080/23294515.2024.2336907","url":null,"abstract":"BACKGROUND\u0000According to some medical ethicists and professional guidelines, there is no ethical difference between withholding and withdrawing life-sustaining treatment. However, medical professionals do not always agree with this notion. Patients and their families may also not regard these decisions as equivalent. Perspectives on life-sustaining treatment potentially differ between cultures and countries. This study compares Japanese physicians' and citizens' attitudes toward hypothetical cases of withholding and withdrawing life-sustaining treatment.\u0000\u0000\u0000METHODS\u0000Ten vignette cases were developed. A web-based questionnaire was administered to 457 citizens and 284 physicians to determine whether they supported withholding or withdrawing treatment.\u0000\u0000\u0000RESULTS\u0000In a case where a patient had an advance directive refusing ventilation, 77% of the physicians and 68% of the citizens chose to withhold treatment. In a case where there was an advance directive but the patient's family requested treatment, 55% of the physicians and 45% of the citizens chose to withhold the ventilator. When a family requested withdrawal of the ventilator but patient wishes were unknown, 19% of the physicians and 48% of the citizens chose to withdraw the ventilator. However, when the patient had also indicated their wishes in writing, 49% of the physicians and 66% of the citizens chose to withdraw treatment. More physicians were prepared to withdraw dialysis (84%) and artificial nutrition (81%) at a patient's request than mechanical ventilation (49%).\u0000\u0000\u0000CONCLUSIONS\u0000A significant proportion of Japanese physicians and citizens were reluctant to withhold or withdraw life-sustaining treatment, even in cases where the patient had indicated their wishes in writing. They were more likely to withhold than withdraw treatment, and more likely to withdraw artificial nutrition than mechanical ventilation. Japanese physicians gave significant weight to family views about treatment but were less likely to agree to withdraw treatment than citizens, indicating a potential source of conflict in clinical settings.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"148 5","pages":"1-11"},"PeriodicalIF":0.0,"publicationDate":"2024-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140731193","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Structural Equation Modeling Analysis on Associations of Moral Distress and Dimensions of Organizational Culture in Healthcare: A Cross-Sectional Study of Healthcare Professionals.","authors":"Tessy A Thomas, Shelley Kumar, F Daniel Davis, Peter Boedeker, Satid Thammasitboon","doi":"10.1080/23294515.2023.2297922","DOIUrl":"10.1080/23294515.2023.2297922","url":null,"abstract":"<p><strong>Objective: </strong>Moral distress is a complex phenomenon experienced by healthcare professionals. This study examined the relationships between key dimensions of Organizational Culture in Healthcare (OCHC)-perceived psychological safety, ethical climate, patient safety-and healthcare professionals' perception of moral distress.</p><p><strong>Design: </strong>Cross-sectional survey.</p><p><strong>Setting: </strong>Pediatric and adult critical care medicine, and adult hospital medicine healthcare professionals in the United States.</p><p><strong>Participants: </strong>Physicians (<i>n</i> = 260), nurses (<i>n</i> = 256), and advanced practice providers (<i>n</i> = 110) participated in the study.</p><p><strong>Main outcome measures: </strong>Three dimensions of OCHC were measured using validated questionnaires: Olson's Hospital Ethical Climate Survey, Agency for Healthcare Research and Quality's Patient Safety Culture Survey, and Edmondson's Team Psychological Safety Survey. The perception of moral distress was measured using the Moral Distress Amidst a Pandemic Survey. The hypothesized relationships between various dimensions were tested with structural equation modeling (SEM).</p><p><strong>Results: </strong>Adequate model fit was achieved in the SEM: a root-mean-square error of approximation =0.072 (90% CI 0.069 to 0.075), standardized root mean square residual = 0.056, and comparative fit index =0.926. Perceived psychological safety (β= -0.357, <i>p</i> <.001) and patient safety culture (β = -0.428, <i>p</i><.001) were negatively related to moral distress experience. There was no significant association between ethical climate and moral distress (β = 0.106, <i>p</i> = 0.319). Ethical Climate, however, was highly correlated with Patient Safety Culture (factor correlation= 0.82).</p><p><strong>Conclusions: </strong>We used structural equation model to test a theoretical model of multi-dimensional organizational culture and healthcare climate (OCHC) and moral distress.Significant associations were found, supporting mitigating strategies to optimize psychological safety and patient safety culture to address moral distress among healthcare professionals. Future initiatives and studies should account for key dimensions of OCHC with multi-pronged targets to preserve the moral well-being of individuals, teams, and organizations.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"120-132"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139075330","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars' Dissemination Practices and Translation Goals.","authors":"Deanne Dunbar Dolan, Rachel H Lee, Mildred K Cho, Sandra Soo-Jin Lee","doi":"10.1080/23294515.2024.2355898","DOIUrl":"10.1080/23294515.2024.2355898","url":null,"abstract":"<p><strong>Background: </strong>Researchers engaged in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics are often publicly funded and intend their work to be in the public interest. These features of U.S. ELSI research create an imperative for these scholars to demonstrate the public utility of their work and the expectation that they engage in research that has potential to inform policy or practice outcomes. In support of the fulfillment of this \"translational mandate,\" the Center for ELSI Resources and Analysis (CERA), funded by the National Human Genome Research Institute (NHGRI), aims to facilitate community-informed, ELSI research results synthesis and dissemination. However, little is known about how ELSI research scholars define the goals of translation and imagine the intended users of their research findings.</p><p><strong>Methodology: </strong>We distributed a Qualtrics survey to ELSI scholars that aimed to determine: (1) researchers' expectations for their research findings in relation to policy or practice outcomes, (2) the stakeholder groups researchers believe could benefit from their research findings, and (3) the methods researchers use to foster the uptake of their findings by those stakeholders.</p><p><strong>Results: </strong>Most ELSI researchers surveyed thought there were stakeholders that could benefit from their research findings, including health care professionals, at-risk individuals, patients, and their family members, policy-makers, and researchers/scientists, and expected their research findings to inform the creation or revision of laws, policies, or practice guidelines. Most researchers planned to disseminate findings directly to relevant stakeholders, with fewer expecting dissemination support from research funders, universities, or other entities.</p><p><strong>Conclusion: </strong>The broad range of research topics, disciplines, and set of potential end users represented in ELSI reseach complicate the work of a knowledge broker. Nonetheless, the CERA can play an important role in disseminating ELSI results to relevant stakeholders. Further research should explore outreach mechanisms.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"147-153"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11180497/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141162814","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers.","authors":"Caitlin E McMahon, Nicole Foti, Melanie Jeske, William R Britton, Stephanie M Fullerton, Janet K Shim, Sandra Soo-Jin Lee","doi":"10.1080/23294515.2023.2279965","DOIUrl":"10.1080/23294515.2023.2279965","url":null,"abstract":"<p><strong>Background: </strong>Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the \"duty to report\" from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator and researcher perspectives on and questions about the assumed value of ROR in PMR.</p><p><strong>Methods: </strong>Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR.</p><p><strong>Results: </strong>Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for <i>non-</i>clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR.</p><p><strong>Conclusions: </strong>Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"108-119"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11090989/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"92156876","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Need to Consider Context: A Systematic Review of Factors Involved in the Consent Process for Genetic Tests from the Perspective of Patients.","authors":"Frédéric Coulombe, Anne-Marie Laberge","doi":"10.1080/23294515.2023.2297935","DOIUrl":"10.1080/23294515.2023.2297935","url":null,"abstract":"<p><p><b>Background:</b> Informed consent for genetic tests is a well-established practice. It should be based on good quality information and in keeping with the patient's values. Existing informed consent assessment tools assess knowledge and values. Nevertheless, there is no consensus on what specific elements need to be discussed or considered in the consent process for genetic tests.<b>Methods:</b> We performed a systematic review to identify all factors involved in the decision-making and consent process about genetic testing, from the perspective of patients. Through public databases, we identified studies reporting factors that influence the decision to accept or decline genetic testing. Studies were included if they reported the perspective of patients or at-risk individuals. All articles were thematically coded.<b>Results:</b> 1989 articles were reviewed: 70 met inclusion criteria and 12 additional articles were identified through the references of included studies. Coding of the 82 articles led to the identification of 45 factors involved in decision-making and consent, which were initially divided into three domains: in favor of, against or with an undetermined influence on genetic testing. Each factor was also divided into three subdomains relating to the informed choice concept: knowledge, values or other. The factors in the \"other\" subdomain were all related to the context of testing (e.g. timing, cost, influence of family members, etc), and were present in all three domains.<b>Conclusions:</b> We describe the network of factors contributing to decision-making and consent process and identify the context of genetic testing as a third component to influence this process. Future studies should consider the evaluation of contextual factors as an important and relevant component of the consent and decision-making process about genetic tests. Based on these results, we plan to develop and test a more comprehensive tool to assess informed consent for genetic testing.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"93-107"},"PeriodicalIF":0.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139378467","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}