Conflict of interest: none to declare.
Article first published online: 13 DEC 2012
Copyright © 2012 Wiley Periodicals, Inc.
American Journal of Medical Genetics Part A
Volume 161, Issue 1, pages 38–47, January 2013
How to Cite
Lakes, K. D., Vaughan, E., Lemke, A., Jones, M., Wigal, T., Baker, D., Swanson, J. M. and Burke, W. (2013), Maternal perspectives on the return of genetic results: Context matters. Am. J. Med. Genet., 161: 38–47. doi: 10.1002/ajmg.a.35673
How to Cite this Article: Lakes KD, Vaughan E, Lemke A, Jones M, Wigal T, Baker D, Swanson JM, Burke W. 2012. Maternal perspectives on the return of genetic results: Context matters. Am J Med Genet Part A 161A:38–47.
- Issue published online: 22 DEC 2012
- Article first published online: 13 DEC 2012
- Manuscript Accepted: 23 AUG 2012
- Manuscript Received: 30 APR 2012
- The Eunice Kennedy Shriver National Institute for Child Health and Development, National Institutes of Health. Grant Numbers: NIH-NICHD-HHSN267200700021C, NIH-NICHD-HHSN275200503415C
- National Center for Advancing Translational Sciences, National Institutes of Health. Grant Number: UL1 TR000153
- research participation;
- return of results;
The objectives of this study were to study maternal preferences for the return of their child's genetic results and to describe the experiences, perceptions, attitudes, and values that are brought to bear when individuals from different racial and cultural backgrounds consider participating in genetic research. We recruited women with diverse sociodemographic profiles to participate in seven focus groups. Twenty-eight percent of participants self-identified as Hispanic; 49% as White, non-Hispanic; and 21% as Asian or Asian American. Focus groups were conducted in English or Spanish and were audio-recorded and transcribed verbatim. Transcripts were analyzed using qualitative thematic methods. Results indicated that preferences and decisions regarding the return of results may depend on both research and individual contextual factors. Participants understood the return of results as a complex issue, where individual and cultural differences in preferences are certain to arise. Another key finding was that participants desired an interpersonal, dynamic, flexible process that accommodated individual preferences and contextual differences for returning results. Our findings indicate a need to have well-developed systems for allowing participants to make and change over time their choices regarding the return of their child's genetic results. © 2012 Wiley Periodicals, Inc.