{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,24]],"date-time":"2026-04-24T04:44:25Z","timestamp":1777005865373,"version":"3.51.4"},"reference-count":37,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2013,2,26]],"date-time":"2013-02-26T00:00:00Z","timestamp":1361836800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2013,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>A population\u2010based pilot study of newborns screening for a rare genetic condition, spinal muscular atrophy (SMA), is being conducted with funding from the National Institutes of Health. The first component of the study is to assess the ethical, legal, and social implications of population\u2010based pilot studies with a focus on public engagement and parental decision\u2010making for the proposed opt\u2010out approach in this research. We conducted focus groups with members of the general public to ascertain attitudes about the pilot study and acceptability of an opt\u2010out approach in two states, Colorado and Utah, where the pilot screening is being proposed (N\u2009=\u200970). We developed an informational video for the project and showed it to the groups prior to the discussion in order to inform participants about population\u2010based research, newborn screening (NBS), permission\/consent models, and SMA. Results indicated support for the conduct of pilot studies that is consistent with the current standard of practice for similar population\u2010based programs. There was support for an opt\u2010out approach for parental decision\u2010making; however there was limited parental knowledge about population\u2010based research, NBS and SMA. In general, our participants considered this pilot study to be low risk and of potential benefit to infants and families. The majority of participants were supportive of an opt\u2010out approach with information delivered through various avenues \u00a9 2013 Wiley Periodicals, Inc.<\/jats:p>","DOI":"10.1002\/ajmg.a.35756","type":"journal-article","created":{"date-parts":[[2013,2,27]],"date-time":"2013-02-27T05:05:37Z","timestamp":1361941537000},"page":"679-686","source":"Crossref","is-referenced-by-count":24,"title":["Public attitudes regarding a pilot study of newborn screening for spinal muscular atrophy"],"prefix":"10.1002","volume":"161","author":[{"given":"Erin","family":"Rothwell","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rebecca A.","family":"Anderson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathryn J.","family":"Swoboda","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Louisa","family":"Stark","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeffrey R.","family":"Botkin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2013,2,26]]},"reference":[{"key":"e_1_2_6_2_1","first-page":"389","article-title":"Serving the family from birth to the medical home. 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