NDLI: Community dissemination and genetic research: moving beyond results reporting.

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Trinidad, Susan Brown Ludman, Evette J. Hopkins, Scarlett James, Rosalina D. Hoeft, Theresa J. Kinegak, Annie Lupie, Henry Kinegak, Ralph Boyer, Bert B. Burke, Wylie
Spatial Coverage	Alaska Washington
Description	Author Affiliation: Trinidad SB ( Department of Bioethics and Humanities, University of Washington, Seattle, Washington.); Ludman EJ ( Group Health Research Institute, Seattle, Washington.); Hopkins S ( Center for Alaska Native Health Research, University of Alaska Fairbanks, Alaska.); James RD ( Department of Bioethics and Humanities, University of Washington, Seattle, Washington.); Hoeft TJ ( Center for Alaska Native Health Research, University of Alaska Fairbanks, Alaska.); Kinegak A ( Community Planning Group, Center for Alaska Native Health Research, University of Alaska Fairbanks, Alaska.); Lupie H ( Community Planning Group, Center for Alaska Native Health Research, University of Alaska Fairbanks, Alaska.); Kinegak R ( Community Planning Group, Center for Alaska Native Health Research, University of Alaska Fairbanks, Alaska.); Boyer BB ( Center for Alaska Native Health Research, University of Alaska Fairbanks, Alaska.); Burke W ( Department of Bioethics and Humanities, University of Washington, Seattle, Washington.)
Abstract	The community-based participatory research (CBPR) literature notes that researchers should share study results with communities. In the case of human genetic research, results may be scientifically interesting but lack clinical relevance. The goals of this study were to learn what kinds of information community members want to receive about genetic research and how such information should be conveyed. We conducted eight focus group discussions with Yup'ik Alaska Native people in southwest Alaska (N = 60) and 6 (N = 61) with members of a large health maintenance organization in Seattle, Washington. Participants wanted to receive genetic information they 'could do something about' and wanted clinically actionable information to be shared with their healthcare providers; they also wanted researchers to share knowledge about other topics of importance to the community. Although Alaska Native participants were generally less familiar with western scientific terms and less interested in web-based information sources, the main findings were the same in Alaska and Seattle: participants wished for ongoing dialogue, including opportunities for informal, small-group conversations, and receiving information that had local relevance. Effective community dissemination is more than a matter of presenting study results in lay language. Community members should be involved in both defining culturally appropriate communication strategies and in determining which information should be shared. Reframing dissemination as a two-way dialogue, rather than a one-way broadcast, supports the twin aims of advancing scientific knowledge and achieving community benefit.
File Format	HTM / HTML
ISSN	15524825
e-ISSN	15524833
DOI	10.1002/ajmg.a.37028
Journal	American Journal of Medical Genetics Part A
Issue Number	7
Volume Number	167
Language	English
Publisher	Wiley-Blackwell
Publisher Date	2015-07-01
Publisher Place	United States
Access Restriction	Open
Subject Keyword	Discipline Genetics Community-based Participatory Research Genetics, Medical Information Dissemination Research Report Alaska Health Maintenance Organizations Inuits Psychology Washington Research Support, N.i.h., Extramural
Content Type	Text
Resource Type	Article
Subject	Genetics Genetics (clinical)

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

Community Dissemination and Genetic Research: Moving Beyond Results Reporting

Researcher practices on returning genetic research results.

Developing the Native People for Cancer Control Telehealth Network.

Capacity building from the inside out: development and evaluation of a CITI ethics certification training module for American Indian and Alaska Native community researchers.

Glad you asked: participants' opinions of re-consent for dbGap data submission.

Return of results: ethical and legal distinctions between research and clinical care.

Moving up the slippery slope: mandated genetic screening on Cyprus.

Religious traditions and prenatal genetic counseling.

Community-based participatory research in a large cohort study of chronic diseases among Alaska native adults.

Community dissemination and genetic research: moving beyond results reporting.

Similar Documents

Community Dissemination and Genetic Research: Moving Beyond Results Reporting

Researcher practices on returning genetic research results.

Developing the Native People for Cancer Control Telehealth Network.

Capacity building from the inside out: development and evaluation of a CITI ethics certification training module for American Indian and Alaska Native community researchers.

Glad you asked: participants' opinions of re-consent for dbGap data submission.

Return of results: ethical and legal distinctions between research and clinical care.

Moving up the slippery slope: mandated genetic screening on Cyprus.

Religious traditions and prenatal genetic counseling.

Community-based participatory research in a large cohort study of chronic diseases among Alaska native adults.

Community dissemination and genetic research: moving beyond results reporting.