The DOI matches its Crossref record.
Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine
Open accessAbstract
Background: The practice of biorepository-based genetics research raises questions related to what ethical obligations researchers have to their participants. It is important to explore and include the thoughts of current biorepository participants as we move forward with this type of research. Methods: Thirty participants (17 cancer patients, 7 cancer-free controls, and 6 relatives) were drawn from the Northwest Cancer Genetics Registry and participated in qualitative interviews lasting between 45 and 90 min. Topics explored in this study include which types of genetic test results participants of large biorepositories expect and would like to receive from research analyzing their samples, as well as thoughts on best practice for conducting this type of research. Results: Cancer cases, controls, and first-degree relatives have differing views on what results they would like to receive from biorepository-based research. Participants across all groups attempted to balance the costs and benefits of returning individual research results. Discussion: In the wake of precision medicine, it is important to describe the range of ways participants in large biorepositories both think and talk about the utilization of their specimens for genetics research.
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In some studies, patients explicitly state that they do not want to know certain results, e.g., about a genetic predisposition to a disease, especially if it cannot be cured.
“In some studies, patients explicitly state that they do not want to know certain results, e.g., about a genetic predisposition to a disease [95], especially if it cannot be cured [61, 118].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [118]
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Erdmann, A., Rehmann-Sutter, C., & Bozzaro, C. (2021) · BMC Medical Ethics · doi:10.1186/s12910-021-00682-8 · Cited by 86
Metadata
- Authors
- Hyams, T., Bowen, D. J., Condit, C., Grossman, J., Fitzmaurice, M., Goodman, D., Wenzel, L., & Edwards, K. L.
- Affiliations
- University of Washington (US)
- University of Georgia (US)
- University of Maryland, College Park (US)
- University of California, Irvine (US)
- ORCID
- Venue
- Public Health Genomics
- Publisher
- S. Karger AG
- Published
- 2016
- Volume
- 19
- Issue
- 5
- Pages
- 269-275
- ISSN
- 1422-2795 (ISSN-L)
- 1662-4246
- 1662-8063
- PMC
- PMC5053808
- OpenAlex
- W2512480008
- Cited by
- 8
- References
- 0
- Citations by year
- 2026: 1 · 2025: 1 · 2023: 3 · 2021: 3
- FWCI
- 0.00
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Public Health Genomics (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- eScholarship (California Digital Library) (submittedVersion)
- Funders
- University of Washington
- National Institutes of Health
- University of California, Irvine
- National Cancer Institute (R01CA149051)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › BRCA gene mutations in cancer
- Keywords
- participant expectations, precision medicine, cancer genetics, genetic test results, research ethics, relatives of cancer patients
- MeSH terms
- Adult, Cost-Benefit Analysis, Female, Genetic Testing, Humans, Male, Neoplasms, Truth Disclosure, Access to Information, Genetic Research, Qualitative Research, Precision Medicine
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