Thought Leader Perspectives on Participant Protections in Precision Medicine Research
Open accessAbstract
Precision medicine research is rapidly taking a lead role in the pursuit of new ways to improve health and prevent disease, but also presents new challenges for protecting human subjects. The extent to which the current “web” of legal protections, including technical data security measures, as well as measures to restrict access or prevent misuse of research data, will protect participants in this context remains largely unknown. Understanding the strength, usefulness, and limitations of this constellation of laws, regulations, and procedures is critical to ensuring not only that participants are protected, but also that their participation decisions are accurately informed. To address these gaps, we conducted in-depth interviews with a diverse group of 60 thought-leaders to explore their perspectives on the protections associated with precision medicine research.
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Some professionals consider apprehension about data confidentiality not being guaranteed.
“Some professionals consider apprehension about data confidentiality not being guaranteed [45, 88, 116].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [116]
According to some researchers, the greatest danger to data confidentiality is in the sloppiness of people who work with the data and load it, for example, onto their laptop or flash drive.
“According to some researchers, the greatest danger here is in the sloppiness of people who work with the data and load it, for example, onto their laptop or flash drive [116].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [116]
Human error represents an additional risk to data security.
“Furthermore, as one study reveals, human error represents an additional risk [116].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [116]
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Codebook Development for Team-Based Qualitative Analysis
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Thought leader perspectives on benefits and harms in precision medicine research
Beskow, L. M., Hammack, C. M., & Brelsford, K. M. (2018) · PLOS ONE · doi:10.1371/journal.pone.0207842 · Cited by 22 · see citing works
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Cited by
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The Future of Precision Medicine in the Cure of Alzheimer’s Disease
Arafah, A., Khatoon, S., Rasool, I., Khan, A., Rather, M. A., Abujabal, K. A., Faqih, Y. A. H., Rashid, H., Rashid, S. M., Bilal Ahmad, S., et al. (2023) · Biomedicines · doi:10.3390/biomedicines11020335 · Cited by 133 · see citing works
Erdmann, A., Rehmann-Sutter, C., & Bozzaro, C. (2021) · BMC Medical Ethics · doi:10.1186/s12910-021-00682-8 · Cited by 86 · see citing works
- Authors
- Hammack, C. M., Brelsford, K. M., & Beskow, L. M.
- Affiliations
- Vanderbilt University Medical Center (US)
- Venue
- Journal of Law, Medicine & Ethics
- Publisher
- Cambridge University Press (CUP)
- Published
- 2019
- Volume
- 47
- Issue
- 1
- Pages
- 134-148
- ISSN
- 1073-1105 (ISSN-L)
- 1748-720X
- PMC
- PMC6515916
- OpenAlex
- W2936265243
- Cited by
- 21
- References
- 2
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 2 · 2023: 2 · 2022: 6 · 2021: 2 · 2020: 4 · 2019: 1
- FWCI
- 2.99
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- The Journal of Law Medicine & Ethics (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health
- National Human Genome Research Institute (R01HG007733)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- research participant protection, research data security, data access restrictions, data misuse prevention, research regulation, informed consent, thought leaders
- MeSH terms
- Confidentiality, Female, Humans, Human Experimentation, Interviews as Topic, Male, Computer Security, Genetic Privacy, Precision Medicine
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