| Title |
A Culture of Understanding: Reflections and Suggestions from a Genomics Research Community Board
|
|---|---|
| Published in |
Progress in Community Health Partnerships: Research, Education, and Action, January 2017
|
| DOI | 10.1353/cpr.2017.0020 |
| Pubmed ID | |
| Authors |
Benjamin Kaplan, Carolyn Caddle-Steele, Gregory Chisholm, Warria A Esmond, Kadija Ferryman, Melvin Gertner, Crispin Goytia, Diane Hauser, Lynne D Richardson, Mimsie Robinson, Carol R Horowitz |
| Abstract |
There has been limited community engagement in the burgeoning field of genomics research. In the wake of a new discovery of genetic variants that increase the risk of kidney failure and are almost unique to people of African ancestry, community and clinical leaders in Harlem, New York, formed a community board to inform the direction of related research. The board advised all aspects of a study to assess the impact of testing for these genetic variants at primary care sites that serve diverse populations, including explaining genetic risk to participants. By reflecting on the board's experiences, we found that community voices can have tangible impact on research that navigates the controversial intersection of race, ancestry, and genomics by heightening vigilance, fostering clear communication between researchers and the community, and encouraging researchers to cede some control. Our reflections and work provide a strong justification for longitudinal community partnerships in genomics research. |
X Demographics
The data shown below were collected from the profiles of 2 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 1 | 50% |
| Unknown | 1 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 2 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 28 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 28 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 4 | 14% |
| Student > Doctoral Student | 3 | 11% |
| Student > Bachelor | 2 | 7% |
| Other | 2 | 7% |
| Professor | 2 | 7% |
| Other | 5 | 18% |
| Unknown | 10 | 36% |
| Readers by discipline | Count | As % |
|---|---|---|
| Social Sciences | 4 | 14% |
| Medicine and Dentistry | 4 | 14% |
| Biochemistry, Genetics and Molecular Biology | 3 | 11% |
| Business, Management and Accounting | 2 | 7% |
| Economics, Econometrics and Finance | 1 | 4% |
| Other | 2 | 7% |
| Unknown | 12 | 43% |
Attention Score in Context
This research output has an Altmetric Attention Score of 26. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 07 December 2022.
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#1,450,162
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Outputs from Progress in Community Health Partnerships: Research, Education, and Action
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Outputs of similar age from Progress in Community Health Partnerships: Research, Education, and Action
#1
of 17 outputs
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So far Altmetric has tracked 386 research outputs from this source. They receive a mean Attention Score of 3.6. This one has done particularly well, scoring higher than 98% of its peers.
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