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Parental Reasons and Reactions toward Return of CYP2D6 Research Results and Perceived Benefits and Harms toward Hypothetical Incidental Findings

Adelsperger, Sarah
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1427813699

Abstract Details

2015, MS, University of Cincinnati, Medicine: Genetic Counseling.
Background: CYP2D6 contributes to the metabolism of more than 25% of drugs prescribed in a clinical setting. Pharmacogenetic testing for CYP2D6 can be beneficial by informing drug selection and dosing. Return of CYP2D6 research results provides the opportunity for direct benefits not typically available to research participants. Knowledge about parental reasons for participation and reactions to return of CYP2D6 pharmacogenetic testing could inform research practice. Genomic studies including those that use genomic approaches for drug response studies also hold the potential to produce incidental findings, but no consensus exists around which incidental findings to report back to children and parents. The purpose of this study was to assess parental reasons for participating in research involving the return of their child’s CYP2D6 research results, and reactions to the receipt of results. This study also explored parents’ perceptions of the benefits and harms of hypothetical incidental findings. Methods: We conducted qualitative interviews with 61 parents following the return of CYP2D6 pharmacogenetic research results. Interview questions probed their reasons for participating, reactions to the results, and the benefits and harms they perceived in the return of incidental findings. All interviews were recorded and transcribed verbatim. Transcripts were coded and analyzed for major themes and subthemes. Results: Thirty-one parents of children who were naive to opioids and 30 parents of children who were previously exposed to opioids participated in the qualitative interviews. No major topical differences were seen between the two groups. The most common reasons given for participating in the study were to help their child and to learn information pertinent to health generally. Less frequently provided reasons included helping others, contributing to research, and trusting CCHMC. When asked about reactions to their child’s CYP2D6 research results, parental responses reflected two broad themes: “perceived normality” and “emotional appraisal filtered through expectations.” Perceived normality included perceptions that “the child is medically normal” or “the child is socio-culturally normal.” Parents also discussed “enabling proactive responses to potential health threats” in regards to benefits of hypothetical incidental findings, and discussed “harm to the parent's mental or emotional well-being" in regards to harms of hypothetical incidental findings. Conclusions: Our findings related to reasons for participation are consistent with previous genomic studies. Our findings suggest that parents are willing to have their children participate in pharmacogenetic research if they view it as beneficial for child or themselves. Themes related to reactions to the results suggest that pharmacogenetic results will not affect parental interactions with child. Parents felt that if they were presented with incidental findings, that the benefits would be that they would be able to improve decisions related to health, and/or advocate for themselves or their child. In regards to harms, parents discussed stress or anxiety as the most likely harm that came from the hypothetical return of incidental findings.
John Lynch, Ph.D. (Committee Chair)
Melanie Myers, Ph.D. (Committee Member)
Cynthia Prows, R.N. M.S.N. (Committee Member)
30 p.
Genetics
pharmacogenetic testing; CYP2D6; incidental findings; return of results

Recommended Citations

Citations

  • Adelsperger, S. (2015). Parental Reasons and Reactions toward Return of CYP2D6 Research Results and Perceived Benefits and Harms toward Hypothetical Incidental Findings [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1427813699

    APA Style (7th edition)

  • Adelsperger, Sarah. Parental Reasons and Reactions toward Return of CYP2D6 Research Results and Perceived Benefits and Harms toward Hypothetical Incidental Findings. 2015. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1427813699.

    MLA Style (8th edition)

  • Adelsperger, Sarah. "Parental Reasons and Reactions toward Return of CYP2D6 Research Results and Perceived Benefits and Harms toward Hypothetical Incidental Findings." Master's thesis, University of Cincinnati, 2015. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1427813699

    Chicago Manual of Style (17th edition)

ucin1427813699
262
© 2015, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.