Best practices for obtaining genomic consent in pediatric traumatic brain injury research

Kaylee C. Schnur, Eliana Gill, Alejandro Guerrero, Nicole Osier, Karin Reuter-Rice

Research output: Contribution to journalArticle

Abstract

Background Precision health relies on large sample sizes to ensure adequate power, generalizability, and replicability; however, a critical first step to any study is the successful recruitment of participants. Objectives This study seeks to explore how the enrollment strategies used in a parent study contributed to the high consent rates, establish current best practices that can be used in future studies, and identify additional factors that contribute to consent into pediatric traumatic brain injury biobanks. Methods Retrospective secondary analysis of data from a parent study with high consent rates was examined to explore factors affecting consent into biobanking studies. Results Of the 76 subjects who were approached, met the eligibility criteria, and reviewed the consent form, only 16 (21.1%) declined to participate. The consented group (n = 60) represents 64.5% of those who met the eligibility criteria upon initial screening (n = 93) and 78.9% of those with confirmed eligibility (n = 76). Analysis of screening data suggested there were no major barriers to consenting individuals into this pediatric traumatic brain injury biobank. Discussion There were no demographic or research-related characteristics that significantly explained enrollment. Ethically, to obtain true informed consent, parents need to understand only their child's diagnosis, prognosis, and medical care, as well as the purpose of the proposed research and its risks and benefits. Researchers need to implement best practices, including a comprehensive review of census data to identify eligible participants to approach, a prescreening protocol, and effective consenting process to obtain informed consent so that precision care initiatives can be pursued.

Original languageEnglish (US)
Pages (from-to)E11-E20
JournalNursing research
Volume68
Issue number2
DOIs
StatePublished - Mar 1 2019

Fingerprint

Informed Consent
Practice Guidelines
Pediatrics
Consent Forms
Censuses
Research
Sample Size
Parents
Research Personnel
Demography
Health
Traumatic Brain Injury
Power (Psychology)

Keywords

  • brain injuries
  • children
  • human genetics
  • precision health
  • trauma

ASJC Scopus subject areas

  • Nursing(all)

Cite this

Best practices for obtaining genomic consent in pediatric traumatic brain injury research. / Schnur, Kaylee C.; Gill, Eliana; Guerrero, Alejandro; Osier, Nicole; Reuter-Rice, Karin.

In: Nursing research, Vol. 68, No. 2, 01.03.2019, p. E11-E20.

Research output: Contribution to journalArticle

Schnur, Kaylee C. ; Gill, Eliana ; Guerrero, Alejandro ; Osier, Nicole ; Reuter-Rice, Karin. / Best practices for obtaining genomic consent in pediatric traumatic brain injury research. In: Nursing research. 2019 ; Vol. 68, No. 2. pp. E11-E20.
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