Decisions to Participate in Fragile X and Other Genomics-Related Research: Native American and African American Voices

2.50
Hdl Handle:
http://hdl.handle.net/10755/160798
Type:
Presentation
Title:
Decisions to Participate in Fragile X and Other Genomics-Related Research: Native American and African American Voices
Abstract:
Decisions to Participate in Fragile X and Other Genomics-Related Research: Native American and African American Voices
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2009
Author:Johnson, Vanessa, Ph.D.
P.I. Institution Name:University of Oklahoma Health Sciences Center
Title:College of Nursing
Contact Address:4502 East 41st Street, Tulsa, OK, 74135, USA
Contact Telephone:9186603983
Co-Authors:V.T. Johnson, College of Nursing, University of Oklahoma Health Sciences Center, Tulsa, OK; K. Edwards, College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, OK; S.L. Sherman, Human Genetics, Emory University School of Nursing,
Persistent under-representation of minorities limits overall advances in genomic research so that interpretation of novel findings within minority populations must be interpreted cautiously. Studies have shown that Native Americans (NA) and African Americans (AA) have a disproportionately lower representation rate in Fragile X and other genomics-related research. Knowledge gaps persist about the associated factors and the impact of the under-representation of minorities in gene related research studies. AIMS: The purpose of this study is to explore factors associated with the under representation of AA and NA in genetic research. Specific aims, as relate to perceptions about participation in genomics-related research, to describe, compare, and contrast, within and between NA and AA adults: 1) factors identified that encourage decisions, 2) factors identified as discouraging a decision, 3) beliefs about the influence of health care networks accessed, 4) recruitment preferences, 5) types of health problems and the likelihood of participation. THEORETICAL FRAMEWORK: Consistent adherence to a Community Based Participatory Research Model (CBPR) was maintained throughout the research process. METHODS: This study featured an exploratory qualitative design in which 9 focus groups, including 75 participants, were conducted. Individuals with whom the participants share racial and cultural identification conducted the focus groups in churches in which the congregations consisted predominately of NA or AA adults. RESULTS: The Strauss and Corbin method including "member checking," and NVIVO program analyses, were used. Themes supporting the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research emerged. CONCLUSIONS: Community-Based outlooks on genetic research may significantly enhance meaningful participation of racial and ethnic minorities in genetics-related research. The findings of this study will contribute to an awareness of barriers and facilitators to the recruitment and representation of AA and NA in genetic research, thus providing a necessary foundation for subsequent effective intervention-based studies.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Midwest Nursing Research Society

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleDecisions to Participate in Fragile X and Other Genomics-Related Research: Native American and African American Voicesen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160798-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Decisions to Participate in Fragile X and Other Genomics-Related Research: Native American and African American Voices</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Midwest Nursing Research Society</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2009</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Johnson, Vanessa, Ph.D.</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Oklahoma Health Sciences Center</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">College of Nursing</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">4502 East 41st Street, Tulsa, OK, 74135, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">9186603983</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">vanessa-johnson@ouhsc.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">V.T. Johnson, College of Nursing, University of Oklahoma Health Sciences Center, Tulsa, OK; K. Edwards, College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, OK; S.L. Sherman, Human Genetics, Emory University School of Nursing,</td></tr><tr><td colspan="2" class="item-abstract">Persistent under-representation of minorities limits overall advances in genomic research so that interpretation of novel findings within minority populations must be interpreted cautiously. Studies have shown that Native Americans (NA) and African Americans (AA) have a disproportionately lower representation rate in Fragile X and other genomics-related research. Knowledge gaps persist about the associated factors and the impact of the under-representation of minorities in gene related research studies. AIMS: The purpose of this study is to explore factors associated with the under representation of AA and NA in genetic research. Specific aims, as relate to perceptions about participation in genomics-related research, to describe, compare, and contrast, within and between NA and AA adults: 1) factors identified that encourage decisions, 2) factors identified as discouraging a decision, 3) beliefs about the influence of health care networks accessed, 4) recruitment preferences, 5) types of health problems and the likelihood of participation. THEORETICAL FRAMEWORK: Consistent adherence to a Community Based Participatory Research Model (CBPR) was maintained throughout the research process. METHODS: This study featured an exploratory qualitative design in which 9 focus groups, including 75 participants, were conducted. Individuals with whom the participants share racial and cultural identification conducted the focus groups in churches in which the congregations consisted predominately of NA or AA adults. RESULTS: The Strauss and Corbin method including &quot;member checking,&quot; and NVIVO program analyses, were used. Themes supporting the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research emerged. CONCLUSIONS: Community-Based outlooks on genetic research may significantly enhance meaningful participation of racial and ethnic minorities in genetics-related research. The findings of this study will contribute to an awareness of barriers and facilitators to the recruitment and representation of AA and NA in genetic research, thus providing a necessary foundation for subsequent effective intervention-based studies.</td></tr></table>en_GB
dc.date.available2011-10-26T23:10:50Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T23:10:50Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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