Preferences regarding genetic research results: Comparing veterans and nonveterans responses

N. Arar, J. Seo, S. Lee, H. E. Abboud, L. A. Copeland, P. Noel, M. Parchman

Research output: Contribution to journalArticlepeer-review

13 Scopus citations

Abstract

Objective: Communicating genetic research results to participants presents ethical challenges. Our objectives were to examine participants' preferences in receiving future genetic research results and to compare preferences reported by veteran and nonveterans participants. Methods: Secondary analysis was performed on data collected in 2000-2004 from 1,575 consent forms signed by Mexican-American participants enrolled in 2 genetic family studies (GFS) in San Antonio: The Family Investigation of Nephropathy and Diabetes (FIND) and the Extended FIND (EFIND). The consent forms for these studies contained multiple-choice questions to examine participants' preferences about receiving their (1) clinical lab results and (2) future genetic research results. The FIND and EFIND databases had information on subjects' demographic characteristics and some selected clinical variables. We identified veterans using the Veterans Health Administration's (VHA's) centralized data repository. We compared veterans' and nonveterans' preferences using Student's t test for continuous variables and χ2 test for discrete variables. A logistic regression analyzed subjects' preference for receiving their research results, controlling for other socio-demographic and clinical variables. Results: The sample included 275 (18%) veterans and 1,247 (82%) nonveterans. Our results indicated a strong desire among the majority of participants 1,445 (95%) in getting their clinical lab research results. Likewise, 93% expressed interest in being informed about their future genetic results. There was no significant difference in veterans' and nonveterans' preference to disclosure of the research results (χ2 test; p > 0.05). Regression analysis showed no significant relationship (p = 0.449) between the outcome (receiving research results) and veterans' responses after controlling for demographics and educational levels. Conclusion: Participants believed they would prefer receiving their genetic research results. Veterans are similar to nonveterans in their preferences. Offering genetic research results to participants should be based on well defined and structured plans to enhance interpretation of genetic data.

Original languageEnglish (US)
Pages (from-to)431-439
Number of pages9
JournalPublic Health Genomics
Volume13
Issue number7-8
DOIs
StatePublished - Dec 2010

Keywords

  • Common complex diseases
  • Ethics
  • Genetic family studies
  • Research results

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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