| Title |
Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research
|
|---|---|
| Published in |
The American Journal of Bioethics, April 2018
|
| DOI | 10.1080/15265161.2018.1431322 |
| Pubmed ID | |
| Authors |
Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond, Sandra Soo-Jin Lee |
| Abstract |
With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: (1) Address the role of history and experience on trust, (2) engage concerns about potential group harm, (3) address cultural values and communication barriers, and (4) integrate patient values and expectations into oversight and governance structures. |
X Demographics
The data shown below were collected from the profiles of 8 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 | 3 | 38% |
| Canada | 2 | 25% |
| Unknown | 3 | 38% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 5 | 63% |
| Scientists | 2 | 25% |
| Practitioners (doctors, other healthcare professionals) | 1 | 13% |
Mendeley readers
The data shown below were compiled from readership statistics for 166 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 166 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 28 | 17% |
| Student > Ph. D. Student | 20 | 12% |
| Student > Master | 14 | 8% |
| Student > Doctoral Student | 10 | 6% |
| Lecturer | 7 | 4% |
| Other | 19 | 11% |
| Unknown | 68 | 41% |
| Readers by discipline | Count | As % |
|---|---|---|
| Social Sciences | 25 | 15% |
| Biochemistry, Genetics and Molecular Biology | 16 | 10% |
| Medicine and Dentistry | 14 | 8% |
| Nursing and Health Professions | 10 | 6% |
| Philosophy | 7 | 4% |
| Other | 24 | 14% |
| Unknown | 70 | 42% |
Attention Score in Context
This research output has an Altmetric Attention Score of 48. 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 24 July 2023.
All research outputs
#827,145
of 24,561,012 outputs
Outputs from The American Journal of Bioethics
#62
of 2,038 outputs
Outputs of similar age
#19,107
of 334,063 outputs
Outputs of similar age from The American Journal of Bioethics
#2
of 47 outputs
Altmetric has tracked 24,561,012 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 96th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,038 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 9.0. This one has done particularly well, scoring higher than 97% of its peers.
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We're also able to compare this research output to 47 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 97% of its contemporaries.