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. 2023 Jun;103(6):672-680.
doi: 10.1111/cge.14325. Epub 2023 Mar 23.

Use of a web-based portal to return normal individual research results in Early Check: Exploring user behaviors and attitudes

Heidi Cope  1 , Beth Lincoln-Boyea  1 , Angela You Gwaltney  1 , Barbara B Biesecker  1 , Rebecca Moultrie  1 , Amir A Alexander  2 , Nancy M P King  3 , Jennifer Check  4 , Allyson Corbo  1 , Janice Tzeng  1 , Katherine Ackerman Porter  1 , Holly L Peay  1
Affiliations

Use of a web-based portal to return normal individual research results in Early Check: Exploring user behaviors and attitudes

Heidi Cope et al. Clin Genet. 2023 Jun.

Abstract

Early Check is a voluntary, large-scale expanded newborn screening study in North Carolina that uses a self-directed web-based portal for return of normal individual research results (IRR). Little is known about participant perspectives in using web-based portals to receive IRR. This study explored user attitudes and behaviors within the Early Check portal using three methods: (1) a feedback survey available to the consenting parent of participating infants (typically mothers), (2) semi-structured interviews conducted with a subset of parents, and (3) Google Analytics. During an approximate 3-year period, 17 936 newborns received normal IRR and there were 27 812 visits to the portal. Most surveyed parents reported viewing their baby's results (86%, 1410/1639). Parents largely found the portal easy to use to get results, and helpful in understanding the results. However, 10% of parents said it was difficult to find enough information to understand their baby's results. In Early Check, providing normal IRR via the portal made a large-scale study practical, and was highly rated by most users. Return of normal IRR may be particularly amenable to web-based portals, as the consequences to participants from not viewing results are modest, and the interpretation of a normal result is relatively straightforward.

Keywords: evaluation study; negative results; newborn screening; patient portals; population genetics.

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References

REFERENCES

    1. Bollinger JM, Scott J, Dvoskin R, Kaufman D. Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study. Genet Med. 2012;14(4):451-457.
    1. Kaufman D, Murphy J, Scott J, Hudson K. Subjects matter: a survey of public opinions about a large genetic cohort study. Genet Med. 2008;10(11):831-839.
    1. Scherr CL et al. What people want to know about their genes: a critical review of the literature on large-scale genome sequencing studies. Healthcare (Basel). 2018;6(3):1-13.
    1. Sabatello M, Zhang Y, Chen Y, Appelbaum PS. In different voices: the views of people with disabilities about return of results from precision medicine research. Pub Health Genom. 2020;23(1-2):42-53.
    1. Wallace SE, Kent A. Population biobanks and returning individual research results: mission impossible or new directions? Hum Genet. 2011;130(3):393-401.

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