Exploration of Potential Benefits and Disadvantages of Medical Genetics Research and Biobanking: Perspectives of Black African Immigrants/Refugees

2.50
Hdl Handle:
http://hdl.handle.net/10755/307960
Category:
Abstract
Type:
Presentation
Title:
Exploration of Potential Benefits and Disadvantages of Medical Genetics Research and Biobanking: Perspectives of Black African Immigrants/Refugees
Author(s):
Buseh, Aaron; Stevens, Patricia E.; Townsend, Leolia; Underwood, Sandra; Kelber, Sheryl T.
Lead Author STTI Affiliation:
Eta Nu
Author Details:
Aaron Buseh, PhD, MPH, MSN, aaronbg@uwm.edu; Patricia E. Stevens, RN, PhD, FAAN; Leolia Townsend, M.S., M.A.; Sandra Underwood, PhD, RN, FAAN; Sheryl T. Kelber, MS
Abstract:

Session presented on: Monday, November 18, 2013

Background:  Critical dialogues about genetic research often have not involved the perspectives of ethnic populations, in particular, the voices of Black African immigrants/refugees. Participation of immigrant populations in genetics research, including bio-banking for personalized healthcare, is warranted as science advances.

 Purpose: The purpose of this study was to explore perspectives of Black African immigrants/refugees regarding advances in medical genetics research and its use in healthcare.

 Methods:  As the second stage in a community-based participatory research project, in-depth interviews were conducted with (n=34) Black African immigrants/refugees from across a range of socioeconomic status exploring perceptions about advances in genetic/genomic research, strategies for achieving more equitable distribution of benefits in genetics discoveries/innovations and strategies to promote their sustained engagement. Participants averaged in age 49.8 years, lived in the US on average 19.5 years, and were highly educated with 29% completing college and 50% having graduate degrees. Data were analyzed thematically.

Results: A range of perceptions, expectations and concerns emerged regarding genetic research. Participants suggested that there may be benefits to genetics research to themselves, their families and society. Many expressed concerns/fears that genetics crosses the ethical threshold presenting false optimisms while tempering with the human body that was created by God. Most were untrusting asking if their genetic information could be used to discriminate against them denying access to resources. Participants suggested scientists establish true partnerships with Black African immigrant communities ensuring transparency throughout the research process while focusing on conditions affecting the Black African immigrant/refugee communities as well as their families in sub-Saharan Africa.

 Conclusion: Incorporating Black African immigrants/refugees in genetic research opens new opportunities to study genes and effects in prevention, diagnosis and treatment for many conditions. Genetic research in immigrant populations must be balanced with ethical, legal and social implications and with community members input to ensure sustainable research.

Keywords:
Genetics and genomic; immigrant/refugee health; personalized healthcare
Repository Posting Date:
19-Dec-2013
Date of Publication:
19-Dec-2013
Conference Date:
2013
Conference Name:
42nd Biennial Convention
Conference Host:
Sigma Theta Tau International, the Honor Society of Nursing
Conference Location:
Indianapolis, Indiana, USA
Description:
42nd Biennial Convention 2013 Theme: Give Back to Move Forward. Held at the JW Marriott
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission.

Full metadata record

DC FieldValue Language
dc.language.isoen_USen_GB
dc.type.categoryAbstracten_GB
dc.typePresentationen_GB
dc.titleExploration of Potential Benefits and Disadvantages of Medical Genetics Research and Biobanking: Perspectives of Black African Immigrants/Refugeesen_GB
dc.contributor.authorBuseh, Aaronen_GB
dc.contributor.authorStevens, Patricia E.en_GB
dc.contributor.authorTownsend, Leoliaen_GB
dc.contributor.authorUnderwood, Sandraen_GB
dc.contributor.authorKelber, Sheryl T.en_GB
dc.contributor.departmentEta Nuen_GB
dc.author.detailsAaron Buseh, PhD, MPH, MSN, aaronbg@uwm.edu; Patricia E. Stevens, RN, PhD, FAAN; Leolia Townsend, M.S., M.A.; Sandra Underwood, PhD, RN, FAAN; Sheryl T. Kelber, MSen_GB
dc.identifier.urihttp://hdl.handle.net/10755/307960-
dc.description.abstract<p>Session presented on: Monday, November 18, 2013</p><b>Background:</b>  Critical dialogues about genetic research often have not involved the perspectives of ethnic populations, in particular, the voices of Black African immigrants/refugees. Participation of immigrant populations in genetics research, including bio-banking for personalized healthcare, is warranted as science advances. <p> <b>Purpose</b>: The purpose of this study was to explore perspectives of Black African immigrants/refugees regarding advances in medical genetics research and its use in healthcare. <p> <b>Methods:</b>  As the second stage in a community-based participatory research project, in-depth interviews were conducted with (n=34) Black African immigrants/refugees from across a range of socioeconomic status exploring perceptions about advances in genetic/genomic research, strategies for achieving more equitable distribution of benefits in genetics discoveries/innovations and strategies to promote their sustained engagement. Participants averaged in age 49.8 years, lived in the US on average 19.5 years, and were highly educated with 29% completing college and 50% having graduate degrees. Data were analyzed thematically.<b></b><p><b>Results: </b>A range of perceptions, expectations and concerns emerged regarding genetic research. Participants suggested that there may be benefits to genetics research to themselves, their families and society. Many expressed concerns/fears that genetics crosses the ethical threshold presenting false optimisms while tempering with the human body that was created by God. Most were untrusting asking if their genetic information could be used to discriminate against them denying access to resources. Participants suggested scientists establish true partnerships with Black African immigrant communities ensuring transparency throughout the research process while focusing on conditions affecting the Black African immigrant/refugee communities as well as their families in sub-Saharan Africa. <p> <b>Conclusion</b>: Incorporating Black African immigrants/refugees in genetic research opens new opportunities to study genes and effects in prevention, diagnosis and treatment for many conditions. Genetic research in immigrant populations must be balanced with ethical, legal and social implications and with community members input to ensure sustainable research.en_GB
dc.subjectGenetics and genomicen_GB
dc.subjectimmigrant/refugee healthen_GB
dc.subjectpersonalized healthcareen_GB
dc.date.available2013-12-19T17:24:42Z-
dc.date.issued2013-12-19-
dc.date.accessioned2013-12-19T17:24:42Z-
dc.conference.date2013en_GB
dc.conference.name42nd Biennial Conventionen_GB
dc.conference.hostSigma Theta Tau International, the Honor Society of Nursingen_GB
dc.conference.locationIndianapolis, Indiana, USAen_GB
dc.description42nd Biennial Convention 2013 Theme: Give Back to Move Forward. Held at the JW Marriotten_GB
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission.en_GB
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