Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease. Fiallos, K., Applegate, C., Mathews, D. J., Bollinger, J., Bergner, A. L, & James, C. A European Journal of Human Genetics, 25:530–537, March, 2017. ![Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease [link]](https://bibbase.org/img/filetypes/link.svg "link")
Paper doi abstract bibtex Although consensus is building that primary (PR) and secondary findings (SF) from genomic research should be offered to participants under some circumstances, data describing (1) actual choices of study participants and (2) factors associated with these choices are limited, hampering study planning. We conducted a cross-sectional analysis of choices made for return of PR and SF during informed consent by members of the first 247 families (790 individuals) enrolled in the Baylor-Hopkins Center for Mendelian Genomics, a genome sequencing study... In this ethnically diverse population, whereas most participants desired PR and SF, more than 20% declined some or all results, highlighting the importance of research participant choice.
@article{fiallos_choices_2017,
title = {Choices for return of primary and secondary genomic research results of 790 members of families with {Mendelian} disease},
volume = {25},
url = {http://www.nature.com/ejhg/journal/vaop/ncurrent/full/ejhg201721a.html},
doi = {doi:10.1038/ejhg.2017.21},
abstract = {Although consensus is building that primary (PR) and secondary findings (SF) from genomic research should be offered to participants under some circumstances, data describing (1) actual choices of study participants and (2) factors associated with these choices are limited, hampering study planning. We conducted a cross-sectional analysis of choices made for return of PR and SF during informed consent by members of the first 247 families (790 individuals) enrolled in the Baylor-Hopkins Center for Mendelian Genomics, a genome sequencing study... In this ethnically diverse population, whereas most participants desired PR and SF, more than 20\% declined some or all results, highlighting the importance of research participant choice.},
journal = {European Journal of Human Genetics},
author = {Fiallos, Katie and Applegate, Carolyn and Mathews, Debra JH and Bollinger, Juli and Bergner, Amanda L and James, Cynthia A},
month = mar,
year = {2017},
keywords = {Berman},
pages = {530--537}
}
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