Motivation for Seeking Genetic Risk Assessment for Alzheimer's Disease: Implications for Health Education

2.50
Hdl Handle:
http://hdl.handle.net/10755/163533
Category:
Abstract
Type:
Presentation
Title:
Motivation for Seeking Genetic Risk Assessment for Alzheimer's Disease: Implications for Health Education
Author(s):
Hurley, Ann; Harvey, Rose; Roberts, J. Scott; Horvath, Kathy J.; Green, Robert C.
Author Details:
Ann Hurley, RN, DNSc, FAAN, Executive Director, Brigham and Woman's Hospital, Center for Excellence in Nursing Practice and School of Nursing, BouvT College of Health Sciences, Northeastern University, Brookline, Massachusetts, USA, email: Ahurley@partners.org; Rose Harvey, RN, DNSc; J. Scott Roberts, PhD; Kathy J. Horvath, RN, PhD; Robert C. Green, MD, MPH
Abstract:
Purpose: Sequencing of the human genome and advances in basic science are promoting translational research in clinical genetics leading to changes in health and disease paradigms. New opportunities for learning genetic health information and challenges for those who will communicate this information are being generated. We use Alzheimer's disease (AD) as the prototype condition for initiating the dialogue about including genetic risk in health education programs. The most robust risk factor for developing AD is the ?4 allele of the apolipoprotein (APOE) on chromosome 19. We explored motivation for seeking genetic risk for AD in a subset (N = 60) from the first randomized controlled clinical trial (RCT) to offer APOE testing. Methods: We used a semi-structured interview guide to elicit background information, personal experiences and beliefs about AD causes and risk factors, genetic knowledge and beliefs regarding AD, and reasons for being in the RCT. We content coded interview transcripts, examined instances of 'why' and contrasted data across participants. Results: Numerous, complex, and interwoven motives for seeking genetic risk information for AD emerged. Planning for the future, hoping to prevent AD, and need to know, contributed to one overarching construct, learning, which was often coupled a second construct, 'altruism,' e.g. 'People have to volunteer -- plus the fact I really wanted to know.' A model of this social transaction illustrates reciprocal relationships developed between researchers and participants. Conclusions: Learning why persons at-risk for AD sought genetic risk information for a severe neurodegenerative disease in the absence of preventative treatments can enhance clinicians' sensitivity if asked 'should I get tested?' We anticipate that genetic susceptibility testing for numerous diseases will move from research to clinical settings. The revelation of complex and interwoven motivating factors to learn genetic risk should be considered when developing future health education programs for AD.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2005
Conference Name:
17th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
New York, New York, USA
Description:
�Translational Research for Quality Health Outcomes: Affecting Practice and Healthcare Policy�, held on April 7th -9th at the Roosevelt Hotel, New York
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. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleMotivation for Seeking Genetic Risk Assessment for Alzheimer's Disease: Implications for Health Educationen_GB
dc.contributor.authorHurley, Annen_US
dc.contributor.authorHarvey, Roseen_US
dc.contributor.authorRoberts, J. Scotten_US
dc.contributor.authorHorvath, Kathy J.en_US
dc.contributor.authorGreen, Robert C.en_US
dc.author.detailsAnn Hurley, RN, DNSc, FAAN, Executive Director, Brigham and Woman's Hospital, Center for Excellence in Nursing Practice and School of Nursing, BouvT College of Health Sciences, Northeastern University, Brookline, Massachusetts, USA, email: Ahurley@partners.org; Rose Harvey, RN, DNSc; J. Scott Roberts, PhD; Kathy J. Horvath, RN, PhD; Robert C. Green, MD, MPHen_US
dc.identifier.urihttp://hdl.handle.net/10755/163533-
dc.description.abstractPurpose: Sequencing of the human genome and advances in basic science are promoting translational research in clinical genetics leading to changes in health and disease paradigms. New opportunities for learning genetic health information and challenges for those who will communicate this information are being generated. We use Alzheimer's disease (AD) as the prototype condition for initiating the dialogue about including genetic risk in health education programs. The most robust risk factor for developing AD is the ?4 allele of the apolipoprotein (APOE) on chromosome 19. We explored motivation for seeking genetic risk for AD in a subset (N = 60) from the first randomized controlled clinical trial (RCT) to offer APOE testing. Methods: We used a semi-structured interview guide to elicit background information, personal experiences and beliefs about AD causes and risk factors, genetic knowledge and beliefs regarding AD, and reasons for being in the RCT. We content coded interview transcripts, examined instances of 'why' and contrasted data across participants. Results: Numerous, complex, and interwoven motives for seeking genetic risk information for AD emerged. Planning for the future, hoping to prevent AD, and need to know, contributed to one overarching construct, learning, which was often coupled a second construct, 'altruism,' e.g. 'People have to volunteer -- plus the fact I really wanted to know.' A model of this social transaction illustrates reciprocal relationships developed between researchers and participants. Conclusions: Learning why persons at-risk for AD sought genetic risk information for a severe neurodegenerative disease in the absence of preventative treatments can enhance clinicians' sensitivity if asked 'should I get tested?' We anticipate that genetic susceptibility testing for numerous diseases will move from research to clinical settings. The revelation of complex and interwoven motivating factors to learn genetic risk should be considered when developing future health education programs for AD.en_GB
dc.date.available2011-10-27T11:09:12Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:09:12Z-
dc.conference.date2005en_US
dc.conference.name17th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationNew York, New York, USAen_US
dc.description�Translational Research for Quality Health Outcomes: Affecting Practice and Healthcare Policy�, held on April 7th -9th at the Roosevelt Hotel, New Yorken_US
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. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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