ArticleAJOB primary research2013
Awareness and Acceptable Practices: IRB and Researcher Reflections on the Havasupai Lawsuit.
Article in AJOB primary research, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
What it found
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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.
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Who cites it
17 citing papers in PubMed.
- Ethical Guidance in Human Paleogenomics: New and Ongoing Perspectives.Annual review of genomics and human genetics · 2022Review
- Strategies for culturally safe research with Native American communities: an integrative review.Contemporary nurse · 2022Review
- Designing Inclusive HPV Cancer Vaccines and Increasing Uptake among Native Americans-A Cultural Perspective Review.Current oncology (Toronto, Ont.) · 2021Review
- Institutional Review Board Preparedness for Disaster Research: a Practical Approach.Current environmental health reports · 2021Review
- Article
- Informed Consent in the Genomics Era.Cold Spring Harbor perspectives in medicine · 2020Review
- Community Protections in American Indian and Alaska Native Participatory Research-A Scoping Review.Social sciences (Basel, Switzerland) · 2019Article
- Diversity In Precision Medicine And Pharmacogenetics: Methodological And Conceptual Considerations For Broadening Participation.Pharmacogenomics and personalized medicine · 2019Article
- Tribal IRBs: A Framework for Understanding Research Oversight in American Indian and Alaska Native Communities.American Indian and Alaska native mental health research (Online) · 2019Article
- A Multilevel Approach to Stakeholder Engagement in the Formulation of a Clinical Data Research Network.Medical care · 2018Article
- A framework for enhancing ethical genomic research with Indigenous communities.Nature communications · 2018Review
- Enhance Diversity Among Researchers to Promote Participant Trust in Precision Medicine Research.The American journal of bioethics : AJOB · 2018Article
- Still Human: A Call for Increased Focus on Ethical Standards in Cadaver Research.HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2016Article
- "It's all about trust": reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.BMC medical ethics · 2016Article
- Implementing Qualitative Data Management Plans to Ensure Ethical Standards in Multi-Partner Centers.Journal of empirical research on human research ethics : JERHRE · 2016Article
- Scientists' perspectives on consent in the context of biobanking research.European journal of human genetics : EJHG · 2015Article
- To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region.PloS one · 2015Article
Corrections and comments
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Authors and funding
2 authors.
Funding
Abstract
backgroundIn 2003, Havasupai tribe members in Arizona discovered that their DNA samples, collected for genetic studies on Type II diabetes, had been used for studies on schizophrenia, migration, and inbreeding without their approval. The resulting lawsuit brought by the Havasupai reached a settlement in April 2010 in which tribe members received monetary compensation and the return of DNA samples. In this study, we examine the perceptions of Institutional Review Board (IRB) chairpersons and human genetic researchers about the case and its impact on the practice of research.
methodsTwenty-minute semi-structured interviews were conducted with 26 Institutional Review Board (IRB) chairs and researchers at six top NIH-funded institutions. Participants were questioned about their knowledge and perceived impact of the Havasupai case and their perceptions of informed consent in genetic research studies.
resultsWe found that most study participants did not perceive that the Havasupai case had a large impact. However, we identified key concerns and opinions of the case, in particular, increased awareness of culturally sensitive issues with informed consent and secondary uses of samples.
conclusionsThe results provide a deeper understanding of how informed consent issues are understood by IRB members and human genetic researchers and the implications for research ethics education.
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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.