{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,25]],"date-time":"2026-07-25T17:15:47Z","timestamp":1784999747874,"version":"3.55.0"},"reference-count":16,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2020,7,9]],"date-time":"2020-07-09T00:00:00Z","timestamp":1594252800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000002","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":[[2021,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>As the use and scope of direct\u2010to\u2010consumer genetic testing (DTC GT), also becoming known as consumer\u2010driven genetic testing, increases, consumers may seek genetic counseling to understand their results and determine healthcare implications. In this study, we interviewed individuals who sought genetic counseling after receiving DTC GT results to explore their motivations, expectations, and experiences. Participants were recruited from the Impact of Personal Genomics (PGen) Study, a longitudinal cohort study of DTC GT customers. We interviewed 15 participants (9 females, mean age = 38 years) by telephone and analyzed the double\u2010coded transcripts using qualitative methods. Motivations for genetic counseling included family and personal health histories, concern and confusion about results, and information\u2010seeking; of note, one\u2010third of our interview participants had Ehlers\u2010Danlos syndrome Type III (hypermobility type). Expectations of genetic counseling sessions were high. Participants generally saw DTC GT results as valid and potentially impactful for their healthcare, wanted more thorough explanations in \u201clayman\u2019s terms,\u201d a pooling of their results with their family and personal health history and a \u201cgame plan.\u201d Several participants had already accessed online resources, including resources typically used by genetics clinicians. Our results point to several elements of a successful DTC GT genetic counseling session: 1) effective contracting when starting the clinic visit, especially determining motivations for genetic counseling, results that are concerning\/confusing and resources already accessed; 2) ascertainment and management of expectations and clearly communicating if and why all results may not be reviewed; 3) explaining how DTC GT differs from clinical genetic testing and why additional testing may not be indicated and 4) listening to (not dismissing) patient concerns about their results. For those patients who seek genetic counseling about DTC GT results, the findings from our study can help inform case preparation and provision of genetic counseling.<\/jats:p>","DOI":"10.1002\/jgc4.1309","type":"journal-article","created":{"date-parts":[[2020,7,10]],"date-time":"2020-07-10T05:53:48Z","timestamp":1594360428000},"page":"329-334","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":24,"title":["Genetic counseling following direct\u2010to consumer genetic testing: Consumer perspectives"],"prefix":"10.1002","volume":"30","author":[{"given":"Tessa","family":"Marzulla","sequence":"first","affiliation":[{"name":"Department of Human Genetics University of Michigan Ann Arbor MI USA"},{"name":"Swedish Medical Center Seattle WA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. Scott","family":"Roberts","sequence":"additional","affiliation":[{"name":"Department of Health Behavior and Health Education School of Public Health University of Michigan Ann Arbor MI USA"},{"name":"Center for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor MI USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raymond","family":"DeVries","sequence":"additional","affiliation":[{"name":"Center for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor MI USA"},{"name":"Department of Learning Health Sciences University of Michigan Medical School Ann Arbor MI USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diane R.","family":"Koeller","sequence":"additional","affiliation":[{"name":"Department of Human Genetics University of Michigan Ann Arbor MI USA"},{"name":"Department of Health Behavior and Health Education School of Public Health University of Michigan Ann Arbor MI USA"},{"name":"Dana Farber Cancer Institute Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert C.","family":"Green","sequence":"additional","affiliation":[{"name":"Division of Genetics Department of Medicine Brigham and Women\u2019s Hospital Boston MA USA"},{"name":"Harvard Medical School Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy R.","family":"Uhlmann","sequence":"additional","affiliation":[{"name":"Department of Human Genetics University of Michigan Ann Arbor MI USA"},{"name":"Center for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor MI USA"},{"name":"Division of Genetic Medicine Department of Internal Medicine University of Michigan Medical School Ann Arbor MI USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,7,9]]},"reference":[{"key":"e_1_2_5_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2012.13"},{"key":"e_1_2_5_3_1","volume-title":"The SAGE handbook of grounded theory","author":"Bryant A.","year":"2010"},{"key":"e_1_2_5_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13073-014-0096-0"},{"key":"e_1_2_5_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1193"},{"key":"e_1_2_5_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/17482631.2017.1371993"},{"key":"e_1_2_5_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/cge.12166"},{"key":"e_1_2_5_8_1","doi-asserted-by":"publisher","DOI":"10.1089\/gtmb.2010.0051"},{"key":"e_1_2_5_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-011-9476-4"},{"key":"e_1_2_5_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-017-0158-8"},{"key":"e_1_2_5_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-017-0106-7"},{"key":"e_1_2_5_12_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13073-015-0188-5"},{"key":"e_1_2_5_13_1","doi-asserted-by":"publisher","DOI":"10.1159\/000431250"},{"key":"e_1_2_5_14_1","unstructured":"Regalado A.(2019).More than 26 million have taken an at\u2010home ancestry test. MIT Technology Review. Retrieved fromhttps:\/\/www.technologyreview.com\/s\/612880\/more\u2010than\u201026\u2010million\u2010people\u2010have\u2010taken\u2010an\u2010at\u2010home\u2010ancestry\u2010test\/."},{"key":"e_1_2_5_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1109"},{"key":"e_1_2_5_16_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-012-9489-7"},{"key":"e_1_2_5_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31538"}],"container-title":["Journal of Genetic Counseling"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fjgc4.1309","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jgc4.1309","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/jgc4.1309","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jgc4.1309","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,2]],"date-time":"2023-09-02T22:53:29Z","timestamp":1693695209000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/jgc4.1309"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,7,9]]},"references-count":16,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2021,2]]}},"alternative-id":["10.1002\/jgc4.1309"],"URL":"https:\/\/doi.org\/10.1002\/jgc4.1309","archive":["Portico"],"relation":{},"ISSN":["1059-7700","1573-3599"],"issn-type":[{"value":"1059-7700","type":"print"},{"value":"1573-3599","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,7,9]]},"assertion":[{"value":"2018-10-22","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-05-27","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-07-09","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}