AJOB Empirical Bioethics最新文献

{"title":"Diversity, Profit, Control: An Empirical Study of Industry Employees' Views on Ethics in Private Sector Genomics.","authors":"Alexis Walker","doi":"10.1080/23294515.2022.2063993","DOIUrl":"10.1080/23294515.2022.2063993","url":null,"abstract":"<p><strong>Background: </strong>Large amounts of capital are currently being invested in genomics companies across the \"bench to clinic pipeline\" - companies which are now shaping the future of biomedicine globally. Understanding the perspectives of people who work in such companies can contribute to shaping this industry in service of just and equitable futures of medicine.</p><p><strong>Methods: </strong>Using in-depth interviews as the primary method, this paper analyzes perspectives on ethical and social issues in private sector genomics expressed by members of the commercial genomics industry in the US.</p><p><strong>Results: </strong>Interviewees described a wide range of issues as pressing ethical concerns in commercial genomics. Key themes included concerns about diversity in genetic datasets, data governance and control, and pricing and profits in the industry. However, concern about diversity of datasets was not accompanied by expressions of concern about diversity in the industry workforce.</p><p><strong>Conclusions: </strong>Most interviewees described concerns in the industry that are rather removed from their own work. But along with this \"ethical distancing,\" moral concerns appeared to be the basis for competition amongst companies - to attract both employees and customers. Research in business ethics suggests that expanding moral analysis of one's own work helps improve day to day decision-making in the interest of justice. Opening space for people to examine ethics in their own subsector may provide a means for the private sector genomics industry to become a leader in ethics in the biosciences and a model for equity in our current moment of late capitalism.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 3","pages":"166-178"},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10194829/pdf/nihms-1899265.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9852391","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":"Managing Pandora’s Box: Familial Expectations around the Return of (Future) Germline Results","authors":"Liza-Marie Johnson, B. Mandrell, Chen Li, Zhaohua Lu, J. Gattuso, Lynn Harrison, Motomi Mori, Annastasia Ouma, M. Pritchard, K. Sharp, K. Nichols","doi":"10.1080/23294515.2022.2063994","DOIUrl":"https://doi.org/10.1080/23294515.2022.2063994","url":null,"abstract":"Abstract Background Pediatric oncology patients are increasingly being offered germline testing to diagnose underlying cancer predispositions. Meanwhile, as understanding of variant pathogenicity evolves, planned reanalysis of genomic results has been suggested. Little is known regarding the types of genomic information that parents and their adolescent children with cancer prefer to receive at the time of testing or their expectations around the future return of genomic results. Methods Parents and adolescent children with cancer eligible for genomic testing for cancer predisposition were surveyed regarding their attitudes and expectations for receiving current and future germline results (ClinicalTrials.gov Identifier: NCT02530658). Results All parents (100%) desired to learn about results for treatable or preventable conditions, with 92.4% wanting results even when there is no treatment or prevention. Parents expressed less interest in receiving uncertain results for themselves (88.3%) than for their children (95.3%). Most parents (95.9%) and adolescents (87.9%) believed that providers have a responsibility to share new or updated germline results indefinitely or at any point during follow-up care. Fewer parents (67.5%) indicated that they would want results if their child was deceased: 10.3% would not want to be contacted, 19.3% were uncertain. Conclusions Expectations for return of new or updated genomic results are high among pediatric oncology families, although up to one third of parents have reservations about receiving such information in the event of their child’s death. These results underscore the importance of high-quality pre-and post-test counseling, conducted by individuals trained in consenting around genomic testing to elicit family preferences and align expectations around the return of germline results.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 1","pages":"152 - 165"},"PeriodicalIF":0.0,"publicationDate":"2022-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49418577","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":"Surrogate Perspectives on Patient Preference Predictors: Good Idea, but I Should Decide How They Are Used.","authors":"Dana Howard,&nbsp;Allan Rivlin,&nbsp;Philip Candilis,&nbsp;Neal W Dickert,&nbsp;Claire Drolen,&nbsp;Benjamin Krohmal,&nbsp;Mark Pavlick,&nbsp;David Wendler","doi":"10.1080/23294515.2022.2040643","DOIUrl":"https://doi.org/10.1080/23294515.2022.2040643","url":null,"abstract":"<p><p>Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to help make treatment decisions for decisionally-incapacitated patients.</p><p><p>This qualitative study used semi-structured interviews to determine the views of experienced surrogates [<i>n</i> = 26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents' overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice.</p><p><p>Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient's best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient's preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups.</p><p><p>Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 2","pages":"125-135"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9761590/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9226390","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":"Governing Gene Drive Technologies: A Qualitative Interview Study.","authors":"N de Graeff,&nbsp;Karin R Jongsma,&nbsp;Jeantine E Lunshof,&nbsp;Annelien L Bredenoord","doi":"10.1080/23294515.2021.1941417","DOIUrl":"https://doi.org/10.1080/23294515.2021.1941417","url":null,"abstract":"<p><strong>Background: </strong>Gene drive technologies (GDTs) bias the inheritance of a genetic element within a population of non-human organisms, promoting its progressive spread across this population. If successful, GDTs may be used to counter intractable problems such as vector-borne diseases. A key issue in the debate on GDTs relates to what governance is appropriate for these technologies. While governance mechanisms for GDTs are to a significant extent proposed and shaped by professional experts, the perspectives of these experts have not been explored in depth.</p><p><strong>Methods: </strong>A total of 33 GDT experts from different professional disciplines were interviewed to identify, better understand, and juxtapose their perspectives on GDT governance. The pseudonymized transcripts were analyzed thematically.</p><p><strong>Results: </strong>Three main themes were identified: (1) engagement of communities, stakeholders, and publics; (2) power dynamics, and (3) decision-making. There was broad consensus amongst respondents that it is important to engage communities, stakeholders, and publics. Nonetheless, respondents had diverging views on the reasons for doing so and the timing and design of engagement. Respondents also outlined complexities and challenges related to engagement. Moreover, they brought up the power dynamics that are present in GDT research. Respondents stressed the importance of preventing the recurrence of historical injustices and reflected on dilemmas regarding whether and to what extent (foreign) researchers can legitimately make demands regarding local governance. Finally, respondents had diverging views on whether decisions about GDTs should be made in the same way as decisions about other environmental interventions, and on the decision-making model that should be used to decide about GDT deployment.</p><p><strong>Conclusions: </strong>The insights obtained in this interview study give rise to recommendations for the design and evaluation of GDT governance. Moreover, these insights point to unresolved normative questions that need to be addressed to move from general commitments to concrete obligations.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"107-124"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23294515.2021.1941417","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39148027","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":"Mining the Data: Exploring Rural Patients' Attitudes about the Use of Their Personal Information in Research.","authors":"Jennifer B McCormick,&nbsp;Margaret Hopkins,&nbsp;Erik B Lehman,&nbsp;Michael J Green","doi":"10.1080/23294515.2022.2040644","DOIUrl":"https://doi.org/10.1080/23294515.2022.2040644","url":null,"abstract":"<p><strong>Background: </strong>This study examines rural patients' perceived importance of knowing or being consulted about researchers' access and use of their personal data (identifiable and de-identified health information, and identifiable and de-identified non-health information) across five scenarios. This study also examines their views on stewardship or governance of their personal information by researchers in their healthcare systems.</p><p><strong>Methods: </strong>We conducted a survey by mail. Data were analyzed using descriptive statistics. Multivariable regression analyses were conducted across each scenario and type of personal data with the same variables included in each model.</p><p><strong>Results: </strong>The majority of participants said it was \"very important/absolutely essential\" to know the purpose of the study, to be asked every time, and to know the policies governing researcher access and use of their identifiable health information. Just over two-thirds of respondents thought it \"very important/absolutely essential\" to know who serves on the data governance committee and to have a community member serve. Distrust in healthcare organizations was positively correlated with the scenarios while willingness to give permission to donate leftover biological specimens was negatively correlated.</p><p><strong>Conclusion: </strong>Our study findings indicate that the type of personal information being accessed and used generally matters to 1,407 patients living in rural Pennsylvania. We also demonstrate that knowing their healthcare organizations' governance policies and practices for managing their personal data is important to many rural Pennsylvania patients. Biomedical researchers need to recognize and attend to those differences as much as possible in order to expand opportunities for and participation in research by residents of these rural communities.</p><p><p>Supplemental data for this article is available online at.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 2","pages":"89-106"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10038193/pdf/nihms-1883496.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9580345","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":"Nature vs. Nurture in Precision Education: Insights of Parents and the Public.","authors":"Maya Sabatello,&nbsp;Bree Martin,&nbsp;Thomas Corbeil,&nbsp;Seonjoo Lee,&nbsp;Bruce G Link,&nbsp;Paul S Appelbaum","doi":"10.1080/23294515.2021.1983666","DOIUrl":"https://doi.org/10.1080/23294515.2021.1983666","url":null,"abstract":"<p><strong>Background: </strong>The philosophical debate about the roles of nature versus nurture in human flourishing is not new. But the rise of precision education-a growing field of research that encourages the use of genetic data to inform educational trajectory and interventions to better meet student needs-has renewed historical and ethical concerns. A major worry is that \"genetic hype\" may skew public perceptions toward a deterministic perception of the child's educational trajectory, regardless of the child's capacities, and underestimation of environmental factors affecting educational outcomes. We tested this hypothesis with parents and adults from the general public in the US.</p><p><strong>Methods: </strong>A newly developed computerized implicit association test (IAT) to assess automatic associations between genetics or environments and student behaviors that are associated with educational achievement was administered to samples of parents of children below 21 years old (n = 450) and adults from the general public (n = 419). The samples were representative of the adult US population and adjusted to oversample Black/African American participants. An overall D score for participants' IATs (range: [-2, 2]) was calculated on the basis of the speed of participants' responses.</p><p><strong>Results: </strong>The mean IAT score for both samples indicated stronger association between the quality of being a good student and environment rather than genetics (parents: mean=-0.146, t = -6.56, p < 0.001; general public: mean = -0.249, t = -9.45, p < 0.0001). Younger participants from the general public showed a stronger association between genetics and educational success than middle-aged participants (β = -0.301, p = 0.006).</p><p><strong>Conclusion: </strong>The views of parents and the general public on behavioral genetics and education are complex but call for investment in creating educational environments that are supportive of student success. Future research is needed to understand differences across age groups and to explore views of other stakeholders involved in determining children's educational trajectories about the roles of nature versus nurture in precision education.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 2","pages":"79-88"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9083499/pdf/nihms-1766827.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9225722","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":"Ethical Reasoning During a Pandemic: Results of a Five Country European Study.","authors":"S B Johnson, F Lucivero, B M Zimmermann, E Stendahl, G Samuel, A Phillips, N Hangel","doi":"10.1080/23294515.2022.2040645","DOIUrl":"10.1080/23294515.2022.2040645","url":null,"abstract":"<p><p><b>Introduction:</b> There has been no work that identifies the hidden or implicit normative assumptions on which participants base their views during the COVID-19 pandemic, and their reasoning and how they reach moral or ethical judgements. Our analysis focused on participants' moral values, ethical reasoning and normative positions around the transmission of SARS-CoV-2.<b>Methods:</b> We analyzed data from 177 semi-structured interviews across five European countries (Germany, Ireland, Italy, Switzerland and the United Kingdom) conducted in April 2020.<b>Results:</b> Findings are structured in four themes: ethical contention in the context of normative uncertainty; patterns of ethical deliberation when contemplating restrictions and measures to reduce viral transmission; moral judgements regarding \"good\" and \"bad\" people; using existing structures of meaning for moral reasoning and ethical judgement.<b>Discussion:</b> Moral tools are an integral part of people's reaction to and experience of a pandemic. 'Moral preparedness' for the next phases of this pandemic and for future pandemics will require an understanding of the moral values and normative concepts citizens use in their own decision-making. Three important elements of this preparedness are: conceptual clarity over what responsibility or respect mean in practice; better understanding of collective mindsets and how to encourage them; and a situated, rather than universalist, approach to the development of normative standards.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 1","pages":"67-78"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7616684/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49102418","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":"Quality Characteristics for Clinical Ethics Support in the Netherlands.","authors":"Laura Hartman,&nbsp;Eva Van Baarle,&nbsp;Marielle Diepeveen,&nbsp;Guy Widdershoven,&nbsp;Bert Molewijk","doi":"10.1080/23294515.2021.1925776","DOIUrl":"https://doi.org/10.1080/23294515.2021.1925776","url":null,"abstract":"<p><p><b>Background:</b> This article presents a set of quality characteristics of clinical ethics support (CES) in the Netherlands.<b>Methods:</b> The quality characteristics were developed with a large group of stakeholders working with CES, participating in the Dutch Network for Clinical Ethics Support (NEON).<b>Results:</b> The quality characteristics concern the following domains: (1) goals of CES, (2) methods of CES, (3) competences of CES practitioners, and (4) implementation of CES. <b>Conclusions:</b> We discuss suggestions for how to use the quality characteristics, discuss some aspects that stand out about these quality characteristics, and reflect on the method and the status of the quality characteristics. The quality characteristics are meant as a heuristic instrument, helping CES practitioners to explore and improve the quality of CES in a health care organization, but at the same time they can be improved based on experiences during their application to CES practices.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"22-32"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23294515.2021.1925776","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39191396","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":"Should Feedback of Individual Results be Integrated into the Consent Process in African Genomics? Participants' Views from an HIV-TB Genomics Research Project in Botswana.","authors":"Dimpho Ralefala,&nbsp;Mary Kasule,&nbsp;Ambroise Wonkam,&nbsp;Mogomotsi Matshaba,&nbsp;Jantina de Vries","doi":"10.1080/23294515.2021.1941414","DOIUrl":"https://doi.org/10.1080/23294515.2021.1941414","url":null,"abstract":"<p><p><b>Background</b>Whilst informed consent is a key component of considering whether individual genomic research results could or should be fed back to research participants, little is known about the views of African research participants on its role.<b>Methods</b>We carried out a qualitative study to explore views of adolescents and parents or caregivers regarding informed consent for feedback of individual results from a genomics research project in Botswana. We conducted 24 deliberative focus group discussions with 93 participants (44 adolescents and 49 parents or caregivers) and 12 in-depth interviews (6 adolescents and 6 parents).<b>Results</b>Our findings revealed that most participants would like to be informed about the possibility of discovering individual genetic results during the consent process and that consent be obtained for feedback during the enrollment process. They further expressed that in cases where prior consent to feedback was not obtained, then participants should be re-contacted where life-saving genetic information is discovered. Participants emphasized the need for researchers to ensure that participants' decisions regarding feedback of results are well-informed. Autonomy, transparency, and communication were identified as key values to uphold during the consent process.<b>Conclusion</b>In conclusion, obtaining participants' consent for feedback of results is important to ensure that their rights and wellbeing are protected in research. This is critical in building trust relationships between participants and researchers.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"48-56"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23294515.2021.1941414","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39150094","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":"Ethics Consultation in U.S. Hospitals: Adherence to National Practice Standards.","authors":"Anita Tarzian,&nbsp;Ellen Fox,&nbsp;Marion Danis,&nbsp;Christopher C Duke","doi":"10.1080/23294515.2021.1996118","DOIUrl":"https://doi.org/10.1080/23294515.2021.1996118","url":null,"abstract":"<p><p><b>Background</b>Adherence to widely accepted practice standards is a frequently used measure of healthcare quality. In the U.S., the most widely recognized authoritative source of practice standards for ethics consultation (EC) is the second edition of the American Society for Bioethics and Humanities' <i>Core Competencies for Healthcare Ethics Consultation</i> report.<b>Methods</b>To determine the extent to which EC practices in U.S. hospitals adhere to these practice standards, we developed and analyzed 12 evaluative measures from a national survey.<b>Results</b>Only three of the 12 standards achieved over 75% adherence with reported EC practices: allowing anyone involved in a case to request an EC (100%), not requiring an attending physician's permission to conduct an EC (97.6%), and having at least one person on the ethics consultation service (ECS) with advanced level EC proficiency (79.3%).<b>Conclusions</b>Implications are discussed for achieving consensus on EC standards as they continue to evolve.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"10-21"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39888727","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}