Factors Influencing Participation in Biospecimen Research among Parents of Youth with Mental Health Conditions

Public Health Genomics
Ashli A Owen-SmithLisa A Croen

Abstract

Biospecimens are tools that have the potential to improve early identification and treatment for autism spectrum disorders (ASD) and bipolar disorders (BPD). Unfortunately, most biobanks lack racial/ethnic diversity. One challenge to including a diverse sample of youth is recruiting and engaging families. We sought to better understand facilitators and barriers to participation in biospecimen research among a diverse group of parents of youth with ASD and BPD. The current study involved 3 Mental Health Research Network sites. At each site, parents participated in an interview that explored attitudes and beliefs about genetic research. Interviews were audio-recorded, and audio files were transcribed and coded using content analysis. A total of 58 interviews were conducted. Four challenges emerged: (1) contacting and engaging potential research participants, (2) motivating potential participants to read recruitment and consent materials, (3) motivating participation in research, in general, and (4) motivating participation in research involving biospecimen donation, specifically. Participants were eager to participate as long as the research process involved trust, clarity, and flexibility. Future research involving youth with me...Continue Reading

References

Nov 14, 2008·American Journal of Medical Genetics. Part a·Catherine A McCartyUNKNOWN Marshfield Clinic PMRP Community Advisory Group
Apr 18, 2012·Twin Research and Human Genetics : the Official Journal of the International Society for Twin Studies·Henrik AnckarsäterPaul Lichtenstein
May 11, 2017·The Permanente Journal·Tracy A BecerraLisa A Croen

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