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Perspectives on Electronic Informed Consent From Patients Underrepresented in Research in the United States: A Focus Group Study.

Publication ,  Journal Article
Simon, CM; Schartz, HA; Rosenthal, GE; Eisenstein, EL; Klein, DW
Published in: J Empir Res Hum Res Ethics
October 2018

Digital informed consent may better inform individuals about health research and increase participation. In the United States and elsewhere, minorities and rural populations are underrepresented in health research and may benefit from well-designed electronic informed consent (eIC). Seven focus groups were conducted with 50 Caucasian, African American, and rural patients in the United States. Participants were asked their preferences for a paper versus electronic informed consent document. Participants found the e-version easier to use, more interesting, and better for understanding. Minority participants emphasized limited access, computer literacy, and trust barriers to eIC. Rural participants were concerned about accessibility, connectivity, privacy, and confidentiality. People see value in electronic consenting. Researchers should consider barriers to eIC among underrepresented populations before recruitment.

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Published In

J Empir Res Hum Res Ethics

DOI

EISSN

1556-2654

Publication Date

October 2018

Volume

13

Issue

4

Start / End Page

338 / 348

Location

United States

Related Subject Headings

  • White People
  • United States
  • Telemedicine
  • Rural Population
  • Research
  • Privacy
  • Paper
  • Minority Groups
  • Middle Aged
  • Male
 

Citation

APA
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ICMJE
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Simon, C. M., Schartz, H. A., Rosenthal, G. E., Eisenstein, E. L., & Klein, D. W. (2018). Perspectives on Electronic Informed Consent From Patients Underrepresented in Research in the United States: A Focus Group Study. J Empir Res Hum Res Ethics, 13(4), 338–348. https://doi.org/10.1177/1556264618773883
Simon, Christian M., Helen A. Schartz, Gary E. Rosenthal, Eric L. Eisenstein, and David W. Klein. “Perspectives on Electronic Informed Consent From Patients Underrepresented in Research in the United States: A Focus Group Study.J Empir Res Hum Res Ethics 13, no. 4 (October 2018): 338–48. https://doi.org/10.1177/1556264618773883.
Simon CM, Schartz HA, Rosenthal GE, Eisenstein EL, Klein DW. Perspectives on Electronic Informed Consent From Patients Underrepresented in Research in the United States: A Focus Group Study. J Empir Res Hum Res Ethics. 2018 Oct;13(4):338–48.
Simon, Christian M., et al. “Perspectives on Electronic Informed Consent From Patients Underrepresented in Research in the United States: A Focus Group Study.J Empir Res Hum Res Ethics, vol. 13, no. 4, Oct. 2018, pp. 338–48. Pubmed, doi:10.1177/1556264618773883.
Simon CM, Schartz HA, Rosenthal GE, Eisenstein EL, Klein DW. Perspectives on Electronic Informed Consent From Patients Underrepresented in Research in the United States: A Focus Group Study. J Empir Res Hum Res Ethics. 2018 Oct;13(4):338–348.
Journal cover image

Published In

J Empir Res Hum Res Ethics

DOI

EISSN

1556-2654

Publication Date

October 2018

Volume

13

Issue

4

Start / End Page

338 / 348

Location

United States

Related Subject Headings

  • White People
  • United States
  • Telemedicine
  • Rural Population
  • Research
  • Privacy
  • Paper
  • Minority Groups
  • Middle Aged
  • Male