Cultural Congruence in International Genetics Research

NCT00767858 | Terminated

• 2 other identifiers: 99990822508-HG-N225
• Study Type: observational
• Target: 9
• Locations: 1 country
• Sites: 1

Brief Summary

This study will explore how cultural differences influence genetics research in developing countries. Human genetics research is becoming more common in developing countries. However, when research is conducted with people living in developing countries, there is a chance that culture differences can lead to misunderstandings between investigators and participants, resulting in ineffective research. This study will explore challenges facing investigators conducting genetics research in developing countries and opportunities to improve this kind of research. Scientists who have conducted genetics research in a developing country may be eligible to participate in this study. Participants are interviewed by telephone. The interview, which lasts about an hour, includes questions about the researchers decision to conduct the study they have done, the times they noticed that culture played a role in the research and the times that were more challenging and less challenging. The interviews are recorded, transcribed and analyzed for themes related to cultural congruence and specific challenges and opportunities with regard to cultural congruence.

Conditions

Cultural Diversity

Keywords

Genetic; Genetic Literacy; Human Genetic Research; Cultural Congruence; Interview

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Participants will include genetics researchers who have had direct contact with participants in human genetic research in developing countries. A researcher may be defined as any project staff, faculty, or investigator involved in carrying out a genetics research protocol in a developing country. Project staff are included as potential participants so that whoever has most contact with genetic research participants is able to participate in the proposed study.
• Researchers will be able to decide whether the country that they are working in is defined as a developing country, as opposed to dictating a fixed list of countries that qualify. This will be assessed by participant report during the screening process.

You may not qualify if:

• Researchers who do research in developing countries but do not have direct contact with human participants.
• Participants who are non-English-speaking or under the age of 18.

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (1)

National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• Betancourt JR, Green AR, Carrillo JE, Ananeh-Firempong O 2nd. Defining cultural competence: a practical framework for addressing racial/ethnic disparities in health and health care. Public Health Rep. 2003 Jul-Aug;118(4):293-302. doi: 10.1093/phr/118.4.293.

  PMID: 12815076 BACKGROUND

• Ezeome ER, Marshall PA. Informed consent practices in Nigeria. Dev World Bioeth. 2009 Dec;9(3):138-48. doi: 10.1111/j.1471-8847.2008.00234.x. Epub 2008 Apr 29.

  PMID: 18452553 BACKGROUND

• Chokshi DA, Thera MA, Parker M, Diakite M, Makani J, Kwiatkowski DP, Doumbo OK. Valid consent for genomic epidemiology in developing countries. PLoS Med. 2007 Apr;4(4):e95. doi: 10.1371/journal.pmed.0040095.

  PMID: 17455985 BACKGROUND

Study Officials

• Barbara B Biesecker

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 6, 2008
• First Posted: October 7, 2008
• Study Start: September 24, 2008
• Study Completion: February 24, 2016
• Last Updated: April 5, 2018

Record last verified: 2016-02-24

Locations

US (1)