A Culture of Understanding
Reflections and Suggestions from a Genomics Research Community Board
Bibliographic Data
| ID | 12809016 |
|---|---|
| Authors | Benjamin Kaplan (Icahn School of Medicine at Mount Sinai, corresponding author), Carolyn Caddle-Steele, Gregory Chisholm (Saint Charles Borromeo Seminary), Warria A Esmond (University Settlement), Kadija Ferryman (0000-0001-8552-1822, Data & Society Research Institute), Melvin Gertner (Elmhurst Hospital Center), Crispin Goytia (Icahn School of Medicine at Mount Sinai), Diane Hauser (Institute for Family Health), Lynne D Richardson (0000-0002-5425-1601, Icahn School of Medicine at Mount Sinai), Mimsie Robinson (Bethel University), Carol R Horowitz (0000-0003-1517-4700, Icahn School of Medicine at Mount Sinai) |
| Year | 2017 |
| Volume | 11 |
| Issue | 2 |
| Pages | 161-165 |
| Publication date | 2017-01-01 |
| Peer Reviewed | Yes |
| Open Access | No |
| Type | ARTICLE |
| Venue | Progress in community health partnerships (JOURNAL) |
| Journal identifiers | ISSN: 1557-055X • E-ISSN: 1557-0541 |
| Publisher | Project MUSE (PUBLISHER • US) |
| DOI | 10.1353/cpr.2017.0020 |
| PMID | 28736408 |
| OpenAlex | W2736689142 |
| Language | EN |
| Citations received | 4 |
| References cited | 4 |
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
Biology · Community-based participatory research · Engineering ethics · Genome · Genomics · Participatory action research · Political science · Public relations · Race (biology · Sociology · Anthropology · BRCA gene mutations in cancer · Engineering · Ethics in Clinical Research · Gender Studies · Race, Genetics, and Society · Genetics
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| Unique citing works | 4 |
|---|---|
| Citations per year | 0,44 |
| Citation span | 2017 - 2026 (10) |
| Citation velocity | current |
| Highly cited | No |
| Citation types | Neutral: 4 |