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Parents’ attitudes towards research involving genome sequencing of their healthy children: a qualitative study

European Journal of Human Genetics volume 32, pages 171–175 (2024)Cite this article

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Abstract

With widespread genomic sequencing research efforts, there is increasing impetus to return results to participants. Parents of healthy children are increasingly asked to participate in genomic research, yet there are limited studies of parental expectations for the return of results amongst healthy children. We explored parental attitudes towards their healthy children’s participation in genomic research and expectations for return of results. Data collection involved semi-structured telephone interviews with parents of healthy children participating in a primary care research network. Transcripts were analyzed thematically using constant comparison. A total of 26 parents were interviewed: 22 were female, 19 self-reported as White/European, and 20 were aged 30–39. Three themes emerged: (1) Reciprocity; Parents preferred to receive medically actionable, childhood-onset results and expected recontact overtime in exchange for their research participation. (2) Downstream impacts of testing; Parents expected future clinical benefits but were concerned about the risk of genetic discrimination. (3) Power and empowerment; Some parents felt empowered to take preventative action for their child and relatives, while others did not want to limit their child’s autonomy. Considering these tensions may help to inform participant-centered approaches to optimize parental decision-making and participation, as well as maximize the utility of results.

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Funding

This project was funded by the McLaughlin Centre (provided to YB). YB was supported by a New Investigator Award from the Canadian Institutes of Health Research and currently holds a Canada Research Chair in Genomics Health Services and Policy. YB received support for this project from the McLaughlin Centre and the New Investigator Award from the Canadian Institutes of Health Research.

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Authors and Affiliations

  1. Genomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Unity Health Toronto, Toronto, ON, Canada

    Christina Di Carlo, Chloe Mighton, Marc Clausen, Esha Joshi, Selina Casalino, Theresa H. M. Kim, Jonathon Maguire & Yvonne Bombard

  2. University of Ottawa Faculty of Medicine, Ottawa, ON, Canada

    Christina Di Carlo

  3. Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada

    Chloe Mighton, Jonathon Maguire & Yvonne Bombard

  4. The Hospital for Sick Children, Toronto, ON, Canada

    Theresa H. M. Kim, Christine Kowal & Catherine Birken

  5. University of Toronto, Toronto, ON, Canada

    Catherine Birken & Jonathon Maguire

Authors
  1. Christina Di Carlo
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  3. Marc Clausen
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Contributions

Conceptualization: CM, THK, MC, YB; Formal analysis: CD, CM, YB; Funding acquisition: YB; Resources (provision of participants): CK, CB, JM. Investigation: SC, CM, CDC, EJ, THK, MC; Methodology: CM, MC, YB; Project administration: THK, MC, YB; Supervision: YB, MC; Visualization: CDC; Writing original draft: CDC, CM, YB, MC; Writing-review and editing: All authors.

Corresponding author

Correspondence to Yvonne Bombard.

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Ethics approval was obtained from the St. Michael’s Hospital Research Ethics Board (REB # 17-026).

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Di Carlo, C., Mighton, C., Clausen, M. et al. Parents’ attitudes towards research involving genome sequencing of their healthy children: a qualitative study. Eur J Hum Genet 32, 171–175 (2024). https://doi.org/10.1038/s41431-023-01476-9

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