{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,24]],"date-time":"2026-09-24T23:30:35Z","timestamp":1790292635100,"version":"4.1.0"},"reference-count":34,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2023,8,28]],"date-time":"2023-08-28T00:00:00Z","timestamp":1693180800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100006492","name":"Division of Intramural Research, National Institute of Allergy and Infectious Diseases","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006492","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2024,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>The majority of genomic sequencing and microarray results are clinically uninformative, meaning that they do not suggest a need for any behavioral action or medical intervention. Prior studies have shown that recipients of uninformative genomic testing results (\u201cuninformative results\u201d hereafter) may incorrectly interpret them to imply a lowered risk of disease or false reassurance about future health risks. Few studies have examined how patients understand uninformative results when they are returned in a research setting, where there is wide variation in analytical specifications of testing, interpretation and reporting practices, and resources to support the return of results. We conducted cross\u2010sectional interviews (<jats:italic>N<\/jats:italic>\u2009=\u200917) to explore how a subset of research participants in one genomics study at the National Institutes of Health reacted to and understood their uninformative test results, which were returned to them via a patient portal without genetic counseling. We found that most participants did not remember the details of the informed consent process, including the distinction between \u201cprimary\u201d and \u201csecondary\u201d findings. Participants had questions about what genes were tested for and, in most cases, requested a list of the genes covered. Several participants incorrectly assumed that autosomal recessive carrier results would have been reported to them if detected. Some participants interpreted their uninformative results to mean that they could forgo prenatal testing, and participants had mixed expectations about whether their results might be reinterpreted in the future. These themes suggest that there are specific challenges to returning uninformative results in research settings. Educational supplements to uninformative test reports may be most useful if they contextualize results in relation to other types of clinical genetic or genomic testing that may be made available to research participants in their lifetimes.<\/jats:p>","DOI":"10.1002\/jgc4.1772","type":"journal-article","created":{"date-parts":[[2023,8,29]],"date-time":"2023-08-29T06:58:00Z","timestamp":1693292280000},"page":"689-698","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Research participants' perspectives about the return of uninformative genomic test results in a clinical research setting"],"prefix":"10.1002","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1132-2411","authenticated-orcid":false,"given":"Leila","family":"Jamal","sequence":"first","affiliation":[{"name":"Center for Cancer Research, Genetics Branch National Cancer Institute  Bethesda Maryland USA"},{"name":"NIH Clinical Center Department of Bioethics  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Makenna","family":"May","sequence":"additional","affiliation":[{"name":"Department of Health, Behavior, and Society Johns Hopkins Bloomberg School of Public Health  Baltimore Maryland USA"},{"name":"Medical Genetics and Genomics Branch National Human Genome Research Institute  Bethesda Maryland USA"},{"name":"National Institute of Allergy and Infectious Diseases  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael R.","family":"Setzer","sequence":"additional","affiliation":[{"name":"National Institute of Allergy and Infectious Diseases  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Yu","sequence":"additional","affiliation":[{"name":"National Institute of Allergy and Infectious Diseases  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benjamin","family":"Berkman","sequence":"additional","affiliation":[{"name":"NIH Clinical Center Department of Bioethics  Bethesda Maryland USA"},{"name":"Bioethics Core National Human Genome Research Institute  Bethesda Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Morgan","family":"Similuk","sequence":"additional","affiliation":[{"name":"National Institute of Allergy and Infectious Diseases  Bethesda Maryland 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