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Browsing by Author "Meslin, Eric M."
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Item Attitudes About the Use of Newborn Dried Blood Spots for Research: A Survey of Underrepresented Parents(Elsevier, 2015-09) Hendrix, Kristin S.; Meslin, Eric M.; Carroll, Aaron E.; Downs, Stephen M.; Department of Pediatrics, IU School of MedicineObjective To identify the relative importance of factors that impact parents’ attitudes toward use of their child’s dried newborn blood spots for research purposes. Methods Respondents were parents aged 18 and older with at least one child aged 17 or younger born in Indiana visiting an urban pediatrics clinic. They were asked to rate the acceptability of hypothetical scenarios involving the research use of blood spots. Three pieces of information varied between the scenarios: 1) who would be conducting the research; 2) whether the child’s identity would be linked to the spots; and 3) whether and how often the parents’ consent would be sought before the research began. Results A total of 506 predominantly black and low-income parents completed the survey. The conjoint analysis model showed good fit (Pearson’s R = 0.998, P < .001). The rank order of factors affecting parents’ attitudes was: 1) consent (importance score = 64.9), 2) whether the child’s identity was linked to the spot (importance score = 19.4), and 3) affiliation of the researcher using the spots (importance score = 14.6). Respondents preferred being asked for their consent each time their children’s spots would be used. They preferred that the children’s identity not be linked to the spots and that the research be conducted by university researchers, though these issues had less impact on attitudes than consent. Conclusions Parents strongly prefer that consent be sought for each use of their children’s blood spots. These findings have implications for future research and policy-making decisions.Item Benchmarks for ethically credible partnerships between industry and academic health centers: beyond disclosure of financial conflicts of interest(Springer (Biomed Central Ltd.), 2015-12) Meslin, Eric M.; Rager, Joshua B.; Schwartz, Peter H.; Quaid, Kimberly A.; Gaffney, Margaret M.; Duke, Jon; Tierney, William H.; Department of Philosophy, IU School of Liberal ArtsRelationships between industry and university-based researchers have been commonplace for decades and have received notable attention concerning the conflicts of interest these relationships may harbor. While new efforts are being made to update conflict of interest policies and make industry relationships with academia more transparent, the development of broader institutional partnerships between industry and academic health centers challenges the efficacy of current policy to effectively manage these innovative partnerships. In this paper, we argue that existing strategies to reduce conflicts of interest are not sufficient to address the emerging models of industry-academic partnerships because they focus too narrowly on financial matters and are not comprehensive enough to mitigate all ethical risk. Moreover, conflict-of-interest strategies are not designed to promote best practices nor the scientific and social benefits of academic-industry collaboration. We propose a framework of principles and benchmarks for "ethically credible partnerships" between industry and academic health centers and describe how this framework may provide a practical and comprehensive approach for designing and evaluating such partnerships.Item A Bibliometric Analysis of an International Research Ethics Trainee Program(2013-12) Fix, Jonathan; Odell, Jere D.; Sina, Barbara; Meslin, Eric M.; Goodman, Ken; Upshur, RossWe used bibliometric analysis to evaluate the citations associated with publications by trainees in the Fogarty International Center’s International Research Ethics Education and Curriculum Development program. Papers published between 2004 and 2008 were identified for analysis. The outcome measures were total citations, h-index, and i-10. A total of 328 manuscripts were identified, with a yearly average of 66 publications and 363 citations. The median number of citations per paper is 3 (IQR Q1–Q3:6). 12.6% (n = 53) of papers were cited over 10 times and the h-index is 22, indicating that 22 papers had been cited at least 22 times. The data indicate that trainees have been productive and contributed to the scholarly literature. Future studies to benchmark this performance with other bioethics education programs are required to make interpretation of citation analysis more meaningful.Item Biobanking and public health: is a human rights approach the tie that binds?(Springer, 2011-07-15) Meslin, Eric M.; Garba, Ibrahim; Robert H. McKinney School of LawEthical principles guiding public health and genomic medicine are often at odds: whereas public health practice adopts collectivist principles that emphasize population-based benefits, recent advances in genomic and personalized medicine are grounded in an individualist ethic that privileges informed consent, and the balancing of individual risk and benefit. Indeed, the attraction of personalized medicine is the promise it holds out to help individuals get the “right medicine for the right problem at the right time.” Research biobanks are an effective tool in the genomic medicine toolbox. Biobanking in public health presents a unique case study to unpack some of these issues in more detail. For example, there is a long history of using banked tissue obtained under clinical diagnostic conditions for later public health uses. But despite the collectivist approach of public health, the principles applied to the ethical challenges of biobanking (e.g. informed consent, autonomy, privacy) remain individualist. We demonstrate the value of using human rights as a public health ethics framework to address this tension in biobanking by applying it to two illustrative cases.Item Biobanks and Electronic Health Records: Ethical and Policy Challenges in the Genomic Age(IU Center for Applied Cybersecurity Research, 2009-10) Meslin, Eric M.; Goodman, KennethIn this paper we discuss the ethical and policy challenges presented by the construction and use of biobanks and electronic health records systems, with a particular focus on how these resources implicate certain types of security concerns for patients, families, health care providers and institutions. These two technology platforms are selected for special emphasis in this paper for two reasons. First and foremost, there is a close connection between them. Indeed, of the many accepted definitions, this one from the German National Bioethics Commission provides a sense of this close connection and the great power and reflects the great power these two separate platforms provide to probe more deeply the connection between genotype and phenotype: "...[B]iobanks are defined as collections of samples of human bodily substances (e.g., cells, tissues, blood or DNA as the physical medium of genetic information) that are or can be associated with personal data and information on their donors." Second, these two topics implicate both clinical ethics issues (those arising at the bedside for health care providers and patients), and human research ethics issues (issues arising for scientists, research subjects, ethics review bodies and regulatory authorities). Both of these sub-specialty areas confront similar and complementary ethical issues; for example, issues arising from the nature and adequacy of informed consent, the sufficiency of systems to protect personal privacy and confidentiality, or the need to balance concerns relating to data security and the need to know. A growing research base supports calls for more attention to these issues, and yet current professional ethics frameworks and policy consultation methods are poorly organized and ill-equipped to anticipate and fully address ethical issues in health information technology generally, or to provide adequate ethical assessment of the tools that elicit these issues. Our strategy is to orient readers to the history and context of these issues, to frame several key challenges for researchers and policy makers, and then to close with several recommendations for next steps.Item Building a data sharing model for global genomic research(Genome Biology, 2014) Kosseim, Patricia; Edward, Dove; Baggaley, Carman; Meslin, Eric M.; Cate, Fred H.; Kaye, Jane; Harris, Jennifer R.; Knoppers, Bartha M.Data sharing models designed to facilitate global business provide insights for improving transborder genomic data sharing. We argue that a flexible, externally endorsed, multilateral arrangement , combined with an objective third-party assurance mechanism, can effectively balance privacy with the need to share genomic data globally.Item Building a data sharing model for global genomic research(BioMed Central, 2014-08-11) Kosseim, Patricia; Dove, Edward S.; Baggaley, Carman; Meslin, Eric M.; Cate, Fred H.; Kaye, Jane; Harris, Jennifer R.; Knoppers, Bartha M.; Department of Medicine, IU School of MedicineData sharing models designed to facilitate global business provide insights for improving transborder genomic data sharing. We argue that a flexible, externally endorsed, multilateral arrangement, combined with an objective third-party assurance mechanism, can effectively balance privacy with the need to share genomic data globally.Item Erratum to: Benchmarks for ethically credible partnerships between industry and academic health centers: beyond disclosure of financial conflicts of interest.(Springer, 2016) Meslin, Eric M.; Rager, Joshua B.; Schwartz, Peter H.; Quaid, Kimberly A.; Gaffney, Margaret M.; Duke, Jon; Tierney, William M.; Department of Philosophy, IU School of Liberal ArtsItem Ethical Issues in Measuring Biomarkers in Children’s Environmental Health(2009-08) Sly, PD; Eskenazi, B; Pronczuk, J; Srám, R; Diaz-Barriga, F; Machin, DG; Carpenter, DO; Surdu, S; Meslin, Eric M.Background Studying the impact of environmental exposures is important in children because they are more vulnerable to adverse effects on growth, development, and health. Assessing exposure in children is difficult, and measuring biomarkers is potentially useful. Research measuring biomarkers in children raises a number of ethical issues, some of which relate to children as research subjects and some of which are specific to biomarker research. Objective As an international group with experience in pediatric research, biomarkers, and the ethics of research in children, we highlight the ethical issues of undertaking biomarker research in children in these environments. Discussion Significant issues include undertaking research in vulnerable communities, especially in developing countries; managing community expectations; obtaining appropriate consent to conduct the research; the potential conflicts of obtaining permission from an ethics review board in an economically developed country to perform research in a community that may have different cultural values; returning research results to participants and communities when the researchers are uncertain of how to interpret the results; and the conflicting ethical obligations of maintaining participant confidentiality when information about harm or illegal activities mandate reporting to authorities. Conclusion None of these challenges are insurmountable and all deserve discussion. Pediatric biomarker research is necessary for advancing child health.Item Ethics and Childhood Vaccination Policy in the United States(American Public Health Association, 2016-02) Hendrix, Kristin S.; Sturm, Lynne A.; Zimet, Gregory D.; Meslin, Eric M.; Department of Pediatrics, IU School of MedicineChildhood immunization involves a balance between parents' autonomy in deciding whether to immunize their children and the benefits to public health from mandating vaccines. Ethical concerns about pediatric vaccination span several public health domains, including those of policymakers, clinicians, and other professionals. In light of ongoing developments and debates, we discuss several key ethical issues concerning childhood immunization in the United States and describe how they affect policy development and clinical practice. We focus on ethical considerations pertaining to herd immunity as a community good, vaccine communication, dismissal of vaccine-refusing families from practice, and vaccine mandates. Clinicians and policymakers need to consider the nature and timing of vaccine-related discussions and invoke deliberative approaches to policy-making.