{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,24]],"date-time":"2026-07-24T09:00:40Z","timestamp":1784883640969,"version":"3.55.0"},"reference-count":42,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2026,2,19]],"date-time":"2026-02-19T00:00:00Z","timestamp":1771459200000},"content-version":"vor","delay-in-days":18,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,2,1]],"date-time":"2026-02-01T00:00:00Z","timestamp":1769904000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100000406","name":"Motor Neurone Disease Association","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000406","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":[[2026,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Predictive genetic testing enables at\u2010risk relatives of people with amyotrophic lateral sclerosis (ALS, also known as motor neuron disease or MND) to find out if they have inherited the genetic variant identified in their family member and have an increased chance of developing symptoms. As research progresses, eligibility for and interest in predictive testing is increasing. This paper explores the experiences of people making decisions about predictive testing and identifies their information needs over the process. Semi\u2010structured interviews were carried out with 14 individuals from across the United Kingdom who had, or were considering, predictive testing for ALS. Interviews were carried out via video call or face\u2010to\u2010face between March and September 2023, transcribed, and analyzed using inductive framework analysis. Findings illustrate a range of experiences. Interviews suggest variation in practice in terms of the structure of the genetic counseling process and the content of information given. Some expressed positive experiences of genetic counseling, and valued feeling listened to, understood, and supported. Others perceived barriers to accessing testing, felt the information provided was directive or not sufficient to support their concerns and decision\u2010making. Information needs varied, and whilst people felt satisfied, there were also diverse, unmet information and support needs raised throughout the decision\u2010making process and beyond. This evidence has been used to support the development of a patient decision aid for predictive genetic testing in ALS.<\/jats:p>","DOI":"10.1002\/jgc4.70184","type":"journal-article","created":{"date-parts":[[2026,2,20]],"date-time":"2026-02-20T01:58:53Z","timestamp":1771552733000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Predictive genetic testing in amyotrophic lateral sclerosis (\n                    <scp>ALS<\/scp>\n                    ): Experiences of decision\u2010making and engagement with\n                    <scp>UK<\/scp>\n                    genetic counseling services"],"prefix":"10.1002","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7182-593X","authenticated-orcid":false,"given":"Jade","family":"Howard","sequence":"first","affiliation":[{"name":"Division of Neuroscience, Sheffield Institute for Translational Neuroscience The University of Sheffield  Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1978-5795","authenticated-orcid":false,"given":"Hilary L.","family":"Bekker","sequence":"additional","affiliation":[{"name":"Leeds Unit of Complex Intervention Development (LUCID), Leeds Institute of Health Sciences, School of Medicine University of Leeds  Leeds UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1269-9053","authenticated-orcid":false,"given":"Christopher J.","family":"McDermott","sequence":"additional","affiliation":[{"name":"Division of Neuroscience, Sheffield Institute for Translational Neuroscience The University of Sheffield  Sheffield UK"},{"name":"Academic Directorate of Neuroscience Royal Hallamshire Hospital  Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5702-3631","authenticated-orcid":false,"given":"Alisdair","family":"McNeill","sequence":"additional","affiliation":[{"name":"Division of Neuroscience, Sheffield Institute for Translational Neuroscience The University of Sheffield  Sheffield UK"},{"name":"Sheffield Clinical Genetics Service  Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,2,19]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41576-023-00592-y"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/nrneurol.2016.182"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.12034"},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2010.01.002"},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(03)00056-9"},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.1093\/ckj\/sfad172"},{"key":"e_1_2_13_8_1","unstructured":"Biogen. (2023).FDA Grants Accelerated Approval for QALSODY\u2122 (tofersen) for SOD1\u2010ALS a Major Scientific Advancement as the First Treatment to Target a Genetic Cause of ALS.https:\/\/investors.biogen.com\/news\u2010releases\/news\u2010release\u2010details\/fda\u2010grants\u2010accelerated\u2010approval\u2010qalsodytm\u2010tofersen\u2010sod1\u2010als"},{"key":"e_1_2_13_9_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra1603471"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(17)30401-5"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1591"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2017.1332079"},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2022.2150556"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.neuron.2011.09.011"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.1136\/practneurol-2021-002989"},{"key":"e_1_2_13_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1749"},{"key":"e_1_2_13_17_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e318204d004"},{"key":"e_1_2_13_18_1","first-page":"1","article-title":"How the prospect of a clinical trial impacts decision\u2010making for predictive genetic testing in ALS","volume":"26","author":"Fontaine M.","year":"2024","journal-title":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration"},{"key":"e_1_2_13_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/cge.12439"},{"key":"e_1_2_13_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474\u20104422(21)00414\u20102"},{"key":"e_1_2_13_21_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-012-9561-3"},{"key":"e_1_2_13_22_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2023.2299204"},{"key":"e_1_2_13_23_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg-2023-109735"},{"key":"e_1_2_13_24_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2025.2469727"},{"key":"e_1_2_13_25_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1904"},{"key":"e_1_2_13_26_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.14024"},{"key":"e_1_2_13_27_1","unstructured":"Howard J. 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