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.

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

Pilot study on criteria in cavity preparation-facts or artifacts?

1973 ◽  
Vol 37 (11) ◽  
pp. 27-31 ◽  
Author(s):  
G Salvendy ◽  
WM Hinton ◽  
GW Ferguson ◽  
PR Cunningham
Keyword(s):  
Pilot Study ◽  
Cavity Preparation

A Pilot Study of Early Storybook Reading With Babies With Hearing Loss

2019 ◽  
Vol 62 (9) ◽  
pp. 3397-3412
Author(s):  
Michelle I. Brown ◽  
David Trembath ◽  
Marleen F. Westerveld ◽  
Gail T. Gillon
Keyword(s):  
Hearing Loss ◽  
Pilot Study ◽  
Visual Analysis ◽  
Single Case ◽  
Eye Contact ◽  
Preliminary Evidence ◽  
Storybook Reading ◽  
Book Selection ◽  
Turn Taking ◽  
Parent Child

Purpose This pilot study explored the effectiveness of an early storybook reading (ESR) intervention for parents with babies with hearing loss (HL) for improving (a) parents' book selection skills, (b) parent–child eye contact, and (c) parent–child turn-taking. Advancing research into ESR, this study examined whether the benefits from an ESR intervention reported for babies without HL were also observed in babies with HL. Method Four mother–baby dyads participated in a multiple baseline single-case experimental design across behaviors. Treatment effects for parents' book selection skills, parent–child eye contact, and parent–child turn-taking were examined using visual analysis and Tau-U analysis. Results Statistically significant increases, with large to very large effect sizes, were observed for all 4 participants for parent–child eye contact and parent–child turn-taking. Limited improvements with ceiling effects were observed for parents' book selection skills. Conclusion The findings provide preliminary evidence for the effectiveness of an ESR intervention for babies with HL for promoting parent–child interactions through eye contact and turn-taking.

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.

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