scholarly journals People with Cerebral Palsy and Their Family’s Preferences about Genomics Research

2021 ◽  
pp. 1-10
Author(s):  
Yana Alexandra Wilson ◽  
Sarah McIntyre ◽  
Emma Waight ◽  
Marelle Thornton ◽  
Saskia van Otterloo ◽  
...  
Keyword(s):  
Cerebral Palsy ◽  
Data Sharing ◽  
Information Needs ◽  
Tertiary Education ◽  
Genomic Research ◽  
Research Network ◽  
Willingness To Participate ◽  
Genomics Research ◽  
International Data ◽  
Survey Responses

<b><i>Introduction:</i></b> The goal of this study was to understand individuals with cerebral palsy (CP) and their family’s attitudes and preferences to genomic research, including international data sharing and biobanking. <b><i>Methods:</i></b> Individuals with CP and their family members were invited to participate in the web-based survey via email (NSW/ACT CP Register) or via posts on social media by Cerebral Palsy Alliance, CP Research Network, and CP Now. Survey responses included yes/no/unsure, multiple choices, and Likert scales. Fisher’s exact and χ<sup>2</sup> tests were used to assess if there were significant differences between subgroups. <b><i>Results:</i></b> Individuals with CP and their families (<i>n</i> = 145) were willing to participate in genomics research (68%), data sharing (82%), and biobanking efforts (75%). This willingness to participate was associated with completion of tertiary education, previous genetic testing experience, overall higher genomic awareness, and trust in international researchers. The survey respondents also expressed ongoing communication and diverse information needs regarding the use of their samples and data. Major concerns were associated with privacy and data security. <b><i>Discussion:</i></b> The success of genomic research and international data sharing efforts in CP are contingent upon broad support and recruitment. Ongoing consultation and engagement of individuals with CP and their families will facilitate trust and promote increased awareness of genomics in CP that may in turn maximize participant uptake and recruitment.

scholarly journals The Canadian Pediatric Cardiology Research Network: A Model National Data-Sharing Organization to Facilitate the Study of Pediatric Heart Diseases

CJC Open ◽  
2020 ◽  
Author(s):  
Frederic Dallaire ◽  
Marie-Claude Battista ◽  
Steven C. Greenway ◽  
Kevin Harris ◽  
Emilie Jean St-Michel ◽  
...  
Keyword(s):  
Data Sharing ◽  
Pediatric Cardiology ◽  
Heart Diseases ◽  
Research Network ◽  
National Data

scholarly journals The Report of Marine Life Genomic Research

2018 ◽  
Author(s):  
Guangyi Fan ◽  
Jianwei Chen ◽  
Tao Jin ◽  
Chengcheng Shi ◽  
Xiao Du ◽  
...  
Keyword(s):  
Recent Progress ◽  
Ethical Issues ◽  
Marine Invertebrates ◽  
Marine Species ◽  
White Paper ◽  
Genomic Research ◽  
Research Progress ◽  
Biological Research ◽  
Marine Microorganisms ◽  
Genomics Research

With the continuing development of sequencing technology, genomics has been applied in a variety of biological research areas. In particular, the application of genomics to marine species, which boast a high diversity, promises great scientific and industrial potential. Significant progress has been made in marine genomics especially over the past few years. Consequently, BGI, leveraging its prominent contributions in genomics research, established BGI-Qingdao, an institute specifically aimed at exploring marine genomics. In order to accelerate marine genomics research and related applications, BGI-Qingdao initiated the International Conference on Genomics of the Ocean (ICG-Ocean) to develop international collaborations and establish a focused and coherent global research plan. Last year, the first ICG-Ocean conference was held in Qingdao, China, during which 47 scientists in marine genomics from all over the world reported on their research progress to an audience of about 300 attendees. This year, we would like to build on that success, drafting a report on marine genomics to draw global attention to marine genomics. We summarized the recent progress, proposed future directions, and we would like to enable additional profound insights on marine genomics. Similar to the annual report on plant and fungal research by Kew Gardens, and the White Paper of ethical issues on experimental animals, we hope our first report on marine genomics can provide some useful insights for researchers, funding agencies as well as industry, and that future versions will expand upon the foundation established here in both breadth and depth of knowledge.This report summarizes the recent progress in marine genomics in six parts including: marine microorganisms, marine fungi, marine algae and plants, marine invertebrates, marine vertebrates and genomics-based applications.

scholarly journals Identification of Factors Associated With the Desire to Participate in a Pediatric Pharmacy Practice-Based Research Network

2018 ◽  
Vol 23 (6) ◽  
pp. 479-485 ◽  
Author(s):  
Jeremy S. Stultz ◽  
Chad A. Knoderer ◽  
Kalen B. Manasco ◽  
Jill A. Morgan ◽  
Hanna Phan
Keyword(s):  
Medical Center ◽  
Academic Medical Center ◽  
Pharmacy Practice ◽  
Research Network ◽  
Willingness To Participate ◽  
Research Experience ◽  
Protected Time ◽  
Academic Medical ◽  
Practice Based Research ◽  
Member Involvement

OBJECTIVES To evaluate the practice-based research network (PBRN) potential within the Pediatric Pharmacy Advocacy Group (PPAG) membership and to identify characteristics associated with member willingness to join a PPAG PBRN. METHODS In October 2016, a 21-question survey was sent by email to approximately 900 PPAG pharmacist members (excluding students) using contact information contained in the PPAG membership database. The survey elucidated information regarding training, clinical and research experience, practice site information, and willingness to participate in a PPAG PBRN. Descriptive statistics described the potential PBRN and multivariate logistic regression determined respondent characteristics associated with willingness to join the PBRN. RESULTS Of 145 survey respondents (a 16% survey response rate), 92 selected “yes” regarding their willingness to participate in the PPAG PBRN. Acute care general pediatrics was the most common area where respondents desired to perform research (44.6% of “yes” respondents), with over 2500 patients/day collectively available. The most common selected limitations to research were time and size of available patient populations (59.8% and 47.8% of “yes” respondents, respectively). Cumulative hours/week members would be willing to devote to the PBRN was approximately 77 to 206. Publication of a retrospective study (OR 10.4, 95% CI 2.1–51.9, p = 0.004), research protected time (OR 4.9, 95% CI 1.4–17.8, p = 0.015), and affiliation with an academic medical center (OR 3.32, 95% CI 1.05–10.45, p = 0.04) were independently associated with willingness (a “yes” response) to join a PPAG PBRN. CONCLUSIONS Within the PPAG membership, there is sufficient interest, expertise, patient exposure, and member time to develop a PBRN focused on pediatric pharmacotherapy. The identified characteristics associated with willingness to join the PBRN can help focus efforts for member involvement, education, and recruitment to ensure sustainability of the PPAG PBRN.

scholarly journals Utilization of Information and Communication Technologies (ICTs) Tools for Sharing of Agricultural Related Information in Osun State: Implications for Rural Information Needs

2020 ◽  
pp. 1-10
Author(s):  
Saheed Ige Adetunbi ◽  
A. T. Kareem ◽  
B. A. Oyebamiji
Keyword(s):  
Regression Analysis ◽  
Information And Communication Technologies ◽  
Significant Relationship ◽  
Information Needs ◽  
Tertiary Education ◽  
Communication Technologies ◽  
Related Information ◽  
Shared Information ◽  
Information And Communication ◽  
Ict Tools

The study was motivated by the need to harness technological advancement to enhance agricultural production in Osun State. The study assessed the utilization of Information and Communication Technologies (ICTs) tools for sharing of agricultural related information in Osun State, Nigeria. The study illustrated the socio economic characteristics of the Respondent, identified the available ICT tools for sharing of various agricultural related information, identified agricultural related information shared through various available ICT tools, measured the frequency of utilization of the identified ICT tools and assessed the severity of challenges encountered by Respondent in the utilization of ICT tools in the study area. Sixty percent of Extension Agents in each of the three zones in the study area were sampled. The data collected were examined using descriptive statistics tools while regression analysis was used to test the significant relationship between the socio-economic characteristics of Respondents and their frequency of utilization of ICT Tools for sharing of agricultural related information in the study areas. The analysis of the data was carried out with the use of SPSS version 22. The findings revealed that the average age of Respondents was 39 years; more than half of the respondent (67.1%) were male; most (81.4%) of the respondent were married; majority (68.6%) of the respondent were Christian; about (70%) of the respondent had tertiary education. The mean household size was 5 members per household; majority of the respondents belonged to one association or the other and they access the internet with their own data plan. Radio (wms 2.7) was ranked first as most available ICT tools for sharing information in the study area. Furthermore, information on availability and sources of farm inputs (wms2.3) was ranked most shared information while information on storage facilities (wms1.0) was ranked the least shared information by the Respondents. Also, the initial cost of procurement of ICT gadgets, cost of maintenance, risk of theft of gadget, and fluctuating power supply were the major challenges encountered with the use of various ICT tools. Regression analysis identified a significant relationship between selected socio-economic characteristics of the Respondents and frequency of Utilization of ICT Tools for sharing Agriculture related information. The study recommended use of Radio as medium through which agricultural related information should be shared bearing in mind its ease of access, little cost of procurement and maintenance, extent of reach and frequency of usage among the respondents. Provision of access to internet facility was recommended in order to afford respondents a limitless right to use information on the World Wide Web. Finally, alternative source of power to enable respondents recharge their ICT gadgets was recommended to make up for unreliable electricity supply.

Consent for Use of Genetic Data among US Hispanics/Latinos: Results from the Hispanic Community Health Study/ Study of Latinos

2021 ◽  
Vol 31 (4) ◽  
pp. 547-558
Author(s):  
Sara Gonzalez ◽  
Garrett Strizich ◽  
Carmen R. Isasi ◽  
Simin Hua ◽  
Betsy Comas ◽  
...  
Keyword(s):  
Community Health ◽  
Data Sharing ◽  
Genetic Data ◽  
Genomic Research ◽  
Health Study ◽  
Medicine Research ◽  
For Profit ◽  
Hispanic Community ◽  
Precision Medicine Research

Inclusion of historically underrepresented populations in biomedical research is critical for large precision medicine research initia­tives. Among 13,721 Hispanic Community Health Study/Study of Latinos (HCHS/SOL) enrollees, we used multivariable-adjusted prevalence ratios to describe characteristics associated with participants’ willingness to consent to different levels of biospecimen and genetic data analysis and sharing. At baseline (2008-2011), HCHS/SOL par­ticipants almost universally consented to the use of biospecimens and genetic data by study investigators and their collabora­tors (97.6%; 95%CI: 97.1, 98.0). Fewer consented to biospecimen and genetic data sharing with investigators not affiliated with the HCHS/SOL research team (81%, 95%CI: 80, 82) or any data sharing with commer­cial/for-profit entities (75%, 95%CI: 74, 76). Those refusing to share their data beyond the study investigators group were more often females, Spanish language-speakers and non-US born individuals. As expected, participants who were retained and recon­sented at the six-year follow up visit tended to embrace broader data sharing, although this varied by group. Over time, Puerto Ricans and Dominicans were more likely to convert to broader data sharing than individuals of a Mexican background. Our analysis suggests that acculturation and im­migration status of specific Hispanic/Latino communities may influence decisions about participation in genomic research projects and biobanks. Ethn Dis. 2021;31(4):547- 558; doi:10.18865/ed.31.4.547

scholarly journals Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers

2020 ◽  
Vol 22 (12) ◽  
pp. 1935-1943
Author(s):  
Vanessa Y. Hiratsuka ◽  
◽  
Michael J. Hahn ◽  
R. Brian Woodbury ◽  
Sara Chandros Hull ◽  
...  
Keyword(s):  
Alaska Native ◽  
Genomic Research ◽  
Health Board ◽  
Socially Responsible ◽  
Health Organizations ◽  
Research Partnerships ◽  
Cultural Considerations ◽  
Research Perspectives ◽  
National Human ◽  
Genomics Research

AbstractMeaningful engagement of Alaska Native (AN) tribes and tribal health organizations is essential in the conduct of socially responsible and ethical research. As genomics becomes increasingly important to advancements in medicine, there is a risk that populations not meaningfully included in genomic research will not benefit from the outcomes of that research. AN people have historically been underrepresented in biomedical research; AN underrepresentation in genomics research is compounded by mistrust based on past abuses, concerns about privacy and data ownership, and cultural considerations specific to this type of research. Working together, the National Human Genome Research Institute and two Alaska Native health organizations, Southcentral Foundation and the Alaska Native Health Board, cosponsored a workshop in July 2018 to engage key stakeholders in discussion, strengthen relationships, and facilitate partnership and consideration of participation of AN people in community-driven biomedical and genomic research. AN priorities related to translation of genomics research to health and health care, return of genomic results, design of research studies, and data sharing were discussed. This report summarizes the perspectives that emerged from the dialogue and offers considerations for effective and socially responsible genomic research partnerships with AN communities.

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