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Ask me later: deciding to have clinical exome trio sequencing for my critically ill child

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References

  1. 1.

    Niemiec, E. et al. Readability of informed consent forms for whole-exome and whole-genome sequencing. J. Community Genet. 9, 143–151 (2018).

    Article  Google Scholar 

  2. 2.

    Shabani. M. et al. Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies. Genet. Med. 21, 1031 (2019).

  3. 3.

    Green, R. C. et al. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genet. Med. 15, 565–574 (2013).

    CAS  Article  Google Scholar 

  4. 4.

    Tomlinson, A. N. et al. “Not tied up neatly with a bow”: professionals’ challenging cases in informed consent for genomic sequencing. J. Genet. Couns. 25, 62–72 (2016).

    Article  Google Scholar 

  5. 5.

    Berrios, C., Koertje, C., Noel-MacDonnell, J., Soden, S. & Lantos, J. Parents of newborns in the NICU enrolled in genome sequencing research: hopeful, but not naïve. Genet. Med. 22, 416–422 (2020).

    Article  Google Scholar 

  6. 6.

    Malek, J. et al. Responsibility, culpability, and parental views on genomic testing for seriously ill children. Genet. Med. 21, 2791–2797 (2019).

    Article  Google Scholar 

  7. 7.

    Bernhardt, B. A. et al. Experiences with obtaining informed consent for genomic sequencing. Am. J. Med. Genet. A. 167A, 2635–2646 (2015).

    Article  Google Scholar 

  8. 8.

    Rego, S., Grove, M. E., Cho, M. K. & Ormond, K. E. Informed consent in the genomics era. Cold Spring Harb. Perspect. Med. 10, a036582 (2020).

    Article  Google Scholar 

  9. 9.

    Hitchcock, E. C., Study, C. & Elliott, A. M. Shortened consent forms for genome-wide sequencing: parent and provider perspectives. Mol. Genet. Genomic Med. 8, e1254 (2020).

  10. 10.

    Kaye, J. et al. Dynamic consent: a patient interface for twenty-first century research networks. Eur. J. Hum. Genet. 23, 141 (2015).

Download references

Acknowledgements

I thank Amy McGuire, Mary Majumder, and Janet Malek for their support and thoughtful input on drafts. Ms. Robinson’s work was supported in part by the National Institutes of Health (NIH) grants, U01HG006485 and U19HD077671. The contents of this paper are solely the responsibility of the author and do not necessarily represent the official views of the NIH.

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Correspondence to Jill Oliver Robinson.

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Robinson, J.O. Ask me later: deciding to have clinical exome trio sequencing for my critically ill child. Genet Med (2021). https://doi.org/10.1038/s41436-021-01231-9

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