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.
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.
Authors: Lindsay Fernández-Rhodes; Kristin L Young; Adam G Lilly; Laura M Raffield; Heather M Highland; Genevieve L Wojcik; Cary Agler; Shelly-Ann M Love; Samson Okello; Lauren E Petty; Mariaelisa Graff; Jennifer E Below; Kimon Divaris; Kari E North Journal: Circ Res Date: 2020-06-04 Impact factor: 17.367
Authors: Rick Overkleeft; Judith Tommel; Andrea W M Evers; Johan T den Dunnen; Marco Roos; Marie-José Hoefmans; Walter E Schrader; Jesse J Swen; Mattijs E Numans; Elisa J F Houwink Journal: Genes (Basel) Date: 2020-11-30 Impact factor: 4.096
Authors: Alexis Walker; Vence L Bonham; Angie Boyce; Ellen Wright Clayton; Debra Garcia; Stephanie Johnson; Oliver Laeyendecker; Michelle Lewis; Joseph B Margolick; Debra Mathews; Michael J Parker; Paul Spicer; Chloe L Thio; Gail Geller; Jeffrey Kahn Journal: Ethics Med Public Health Date: 2021-06-07
Authors: Marilyn E Coors; Noah Westfall; Linda Zittleman; Matthew Taylor; John M Westfall Journal: Biopreserv Biobank Date: 2017-11-30 Impact factor: 2.300