scholarly journals Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between

2014 ◽  
Vol 94 (6) ◽  
pp. 818-826 ◽  
Author(s):  
Gail P. Jarvik ◽  
Laura M. Amendola ◽  
Jonathan S. Berg ◽  
Kyle Brothers ◽  
Ellen W. Clayton ◽  
...  
Keyword(s):  
Research Participants ◽  
Genomic Results

The return of individual genomic results to research participants: design and pilot study of Tohoku Medical Megabank Project

2021 ◽  
Author(s):  
Hiroshi Kawame ◽  
Akimune Fukushima ◽  
Nobuo Fuse ◽  
Fuji Nagami ◽  
Yoichi Suzuki ◽  
...  
Keyword(s):  
Pilot Study ◽  
Research Participants ◽  
Genomic Results

scholarly journals Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants

2021 ◽  
pp. 1-12
Author(s):  
Megan B. Raymond ◽  
Kayla E. Cooper ◽  
Lisa S. Parker ◽  
Vence L. Bonham
Keyword(s):  
Low Income ◽  
Clinical Care ◽  
Genomic Research ◽  
Research Results ◽  
Low Resource ◽  
Research Participants ◽  
Research Programs ◽  
Ancillary Care ◽  
Genomic Results ◽  
Resource Research

<b><i>Introduction:</i></b> Many research programs are challenged to accommodate low-resource research participants’ (LRRP) ancillary care needs when returning genomic research results. We define LRRP as those who are low income, uninsured, underinsured, or facing barriers to act upon the results returned. This study evaluates current policies and practices surrounding return of results (RoR) to LRRP, as well as the attitudes of investigators toward providing ancillary care to LRRP. <b><i>Methods:</i></b> A semi-structured interview study was conducted with representatives of 35 genomic research programs nationwide. Eligible programs were returning, or planning to return, medically actionable genomic results to participants. <b><i>Results:</i></b> Three content categories emerged from this study, including: (1) RoR structures, (2) barriers to RoR to LRRP, and (3) solutions to meet community and LRRP needs. Three major structures of RoR emerged: (1) RoR Embedded in Clinical Care, (2) RoR Independent of Clinical Care, and (3) Reliance on Clinical Partnerships to Facilitate RoR. Inadequacy of program resources to address the needs of LRRP was commonly considered a significant obstacle. The attitudes and views of informants regarding responsibility to provide ancillary care for LRRP receiving genomic results were highly varied. Some informants believed that genomic sequencing and testing was not a priority for LRRP because of other pressing issues in their lives, such as housing and food insecurity. Research programs differ regarding whether clinical and social support for LRRP is considered within the purview of the research team. Some programs instituted accommodations for LRRP, including social work referral and insurance enrollment assistance. <b><i>Conclusion:</i></b> Support to access downstream treatment is not readily available for LRRP in many genomic research programs. Development of best practices and policies for managing RoR to LRRP is needed.

International Research and Variation in Views of Ethnicity

2012 ◽  
Vol 2 (2) ◽  
pp. 66-72
Author(s):  
Ella Inglebret ◽  
Amy Skinder-Meredith ◽  
Shana Bailey ◽  
Carla Jones ◽  
Ashley France
Keyword(s):  
United States ◽  
Classification System ◽  
International Research ◽  
The United States ◽  
Research Articles ◽  
Journal Articles ◽  
Research Participants ◽  
The Past ◽  
International Scale ◽  
Publication Patterns

The authors in this article first identify the extent to which research articles published in three American Speech-Language-Hearing Association (ASHA) journals included participants, age birth to 18 years, from international backgrounds (i.e., residence outside of the United States), and go on to describe associated publication patterns over the past 12 years. These patterns then provide a context for examining variation in the conceptualization of ethnicity on an international scale. Further, the authors examine terminology and categories used by 11 countries where research participants resided. Each country uses a unique classification system. Thus, it can be expected that descriptions of the ethnic characteristics of international participants involved in research published in ASHA journal articles will widely vary.

Ambiguities of “Insider-ness” in the Study of Religion

2017 ◽  
Vol 11 (2) ◽  
pp. 157-169
Author(s):  
Serawit Debele
Keyword(s):  
Multiple Identities ◽  
Ethnic Background ◽  
Research Participants ◽  
Economic Context ◽  
Ambiguous Position ◽  
Political Persuasion

Based on the author’s experience in conducting fieldwork on religion in Ethiopia, in this article she analyses the complexities of being an insider in a certain socio-political and economic context. Instead of ascribing an essence to insider-ness as a straightforward and definite category, it is argued that insider-ness is a product of dynamic and complex intersubjective interactions and processes. It is an ambiguous position marked by a continuous shift resulting from the researcher’s navigations between multiple identities at different times and environments in relation to research participants. As pointed out by Bourke (2014), the perpetual flux of one’s identity as an insider or an outsider stems from the researcher’s position: gender, class, ethnic background and religious as well as political persuasion. Furthermore, in as much as one enjoys the associated benefits thereof, the insider is faced with myriad challenges due to her or his variegated identities that in turn inform interlocutors’ perceptions, expectations and responses.

RECRUITMENT OF RESEARCH PARTICIPANTS FROM U.S. JURY POOLS

2001 ◽  
Vol 88 (4) ◽  
pp. 981
Author(s):  
CRYSTALS PURVIS COOPER
Keyword(s):  
Research Participants

THE USE OF E-BOOK TO IMPROVE READING COMPREHENSION AMONG YEAR 4 PUPILS

2018 ◽  
Vol 3 (1) ◽  
pp. 23-32
Author(s):  
Yee Bee Choo ◽  
Nurul Syazana Zainuddin
Keyword(s):  
Reading Comprehension ◽  
Primary Schools ◽  
Reading Skills ◽  
Reflective Journal ◽  
Research Participants ◽  
Teaching Of Reading ◽  
Post Test ◽  
The Mean ◽  
Level Of Understanding ◽  
Level Of Motivation

This is an Action Research of using the Story Jumper as an E-book to improve the reading comprehension among Year 4 pupils in one of the primary schools in Malaysia. The participants involved were twenty pupils consisting of seven males and thirteen females. Three data collection methods employed were pre-test and post-test, pupils’ work and teacher’s reflective journal. The findings showed that the use of E-book had increased the level of understanding in reading comprehension among the research participants. The mean for the pre-test and post-test had increased from 45.83 to 93.33. The pupils’ work indicated positive improvements in terms of their level of understanding and responses in reading. It was also found from the reflective journal that the research participants had participated actively in the learning process and their level of motivation was also increased. The implication is to use E-book in the teaching of reading skills among the primary school learners.

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