ArticleThe American journal of bioethics : AJOB2018
Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.
Article in The American journal of bioethics : AJOB, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 132 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
132 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Examining inclusivity: the use of AI and diverse populations in health and social care: a systematic review.BMC medical informatics and decision making · 2025Pooled it
- Patients' perspectives related to ethical issues and risks in precision medicine: a systematic review.Frontiers in medicine · 2023Pooled it
- Standard HIPAA Authorization Forms Decreased Response Rates for a Multi-site Pragmatic Trial.Journal of general internal medicine · 2025Trial
- Trial
- Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary Working Group.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
- Factors Associated with Trust and Likelihood of Participation in Pandemic-Related Clinical Trials Among Blacks in the U.S. Deep South.Journal of racial and ethnic health disparities · 2026Article
- From equity to solidarity: how care and relationality transform the debate on justice in genomics.Journal of community genetics · 2026Article
- Participant Perspectives on Data Sharing in Clinical Craniofacial Research: Qualitative Interviews With Participants With Craniofacial Microsomia and Their Caregivers.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
- Educators, Not Influencers: Health Content Creator Perspectives on Research Recruitment Collaboration.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- "There's no representation": a qualitative study of attitudes and motivations towards genomic research participation among Australian South Asians.European journal of human genetics : EJHG · 2026Article
- Justice in the governance of personal health data spaces: stakeholder perspectives in Belgium.BMC medical ethics · 2026Article
- Navigating data sharing in research.American journal of human genetics · 2026Review
- Personalizing Approaches in International Projects Engaging Individuals with Vulnerabilities: The Lessons Learned for a Person-Centered Research.Journal of personalized medicine · 2026Article
- Genomic newborn screening: data retention for research and clinical reuse.European journal of human genetics : EJHG · 2026Article
- Parent perspectives on neonatal research without prior consent: a mixed-methods interview study.BMC medical ethics · 2026Article
- Beyond the Guinea Pig Myth: Understanding Complex Attitudes Toward Clinical Trials Participation in a Community Clinic.Journal of cancer education : the official journal of the American Association for Cancer Education · 2026Article
- BRIDGING THE GAP: ENHANCING THE GENERALIZABILITY OF EPIGENETIC CLOCKS THROUGH TRANSFER LEARNING.The annals of applied statistics · 2026Article
- Returning value to communities from the All of Us Research Program through the lens of social determinants of health and ethical, legal, and social implications.International journal for equity in health · 2026Review
- Implementing broad consent for research with routinely collected clinical data and residual biosamples in a cancer hospital: using mixed methods approach to evaluate consent rates and patients' perspectives.BMC medical ethics · 2026Article
- Assessment of Participant Satisfaction and Overall Experience: A Cross-Sectional Survey to Inform Trial Conduct.Patient preference and adherence · 2026Article
72 more citing papers are in PubMed but not listed here.
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Authors and funding
9 authors.
Funding
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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.