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Cited by 50Ethics in Clinical ResearchEthics and bioethics in healthcareMedical and Health Sciences Research

The DOI matches its Crossref record.

Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future

Callier, Shawneequa L., Abudu, Rachel, Mehlman, Maxwell J., Singer, Mendel E., Neuhauser, Duncan, Caga‐Anan, Charlisse, Wiesner, Georgia L.·2016·Bioethics
DOI 10.1111/bioe.12285
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Abstract

Purpose: This review identifies the prominent topics in the literature pertaining to the ethical, legal, and social issues (ELSI) raised by research investigating personalized genomic medicine (PGM). Methods: The abstracts of 953 articles extracted from scholarly databases and published during a 5‐year period (2008–2012) were reviewed. A total of 299 articles met our research criteria and were organized thematically to assess the representation of ELSI issues for stakeholders, health specialties, journals, and empirical studies. Results: ELSI analyses were published in both scientific and ethics journals. Investigational research comprised 45% of the literature reviewed (135 articles) and the remaining 55% (164 articles) comprised normative analyses. Traditional ELSI concerns dominated the discourse including discussions about disclosure of research results. In fact, there was a dramatic increase in the number of articles focused on the disclosure of research results and incidental findings to research participants. Few papers focused on particular disorders, the use of racial categories in research, international communities, or special populations (e.g., adolescents, elderly patients, or ethnic groups). Conclusion: Considering that strategies in personalized medicine increasingly target individuals’ unique health conditions, environments, and ancestries, further analysis is needed on how ELSI scholarship can better serve the increasingly global, interdisciplinary, and diverse PGM research community.

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  • Incidental findings associated with genetic traits of unknown clinical significance or findings of misattributed parentage are problematic, because communicating these findings to patients and their families can also trigger stress and affect family relationships.

    “In addition, incidental findings associated with genetic traits of unknown clinical significance or findings of misattributed parentage [8] are problematic, because communicating these findings to patients and their families can also trigger stress and affect family relationships.”

    From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [8]

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Metadata

Authors
Callier, S. L., Abudu, R., Mehlman, M. J., Singer, M. E., Neuhauser, D., Caga‐Anan, C., & Wiesner, G. L.
Affiliations
  • George Washington University (US)
  • Case Western Reserve University (US)
  • Vanderbilt University (US)
Corresponding author
Callier, Shawneequa L.
ORCID
Venue
Bioethics
Publisher
Wiley
Published
2016-10-21
Volume
30
Issue
9
Pages
698-705
ISSN
  • 0269-9702 (ISSN-L)
  • 1467-8519
DOI
10.1111/bioe.12285
OpenAlex
W2537478982
Cited by
50
References
0
Citations by year
2026: 6 · 2025: 5 · 2024: 3 · 2023: 6 · 2022: 7 · 2021: 9 · 2020: 7 · 2019: 1 · 2018: 3 · 2017: 3
FWCI
2.32
Type
journal article
Language
en
Open access
closed
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Bioethics (publishedVersion)
  • PubMed (publishedVersion)
Funders
National Human Genome Research Institute (R01 PA‐08–012)
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
  • Social Sciences › Law › Medical and Health Sciences Research
Keywords
personalized genomic medicine, ethical, legal and social implications, research ethics, disclosure of research results, incidental finding, special populations, adolescents, elderly patients, ethnic groups, ancestry, global research community
MeSH terms
Humans, Social Responsibility, Social Values, Genome, Human, Human Genome Project, Genomics, Ethical Theory, Ethics, Research, Precision Medicine

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