{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T23:14:56Z","timestamp":1789514096453,"version":"build-2803163510"},"reference-count":20,"publisher":"BMJ","issue":"8","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Med Ethics"],"published-print":{"date-parts":[[2006,8]]},"abstract":"<jats:p><jats:bold>Background:<\/jats:bold>Privacy laws have recently created restrictions on how researchers can approach study participants.<\/jats:p><jats:p><jats:bold>Method:<\/jats:bold>In a randomised trial of 152 patients, 50\u201374 years old, in a family practice, 60 were randomly selected to opt-out and 92 to opt-in methods. Patients were sent an introductory letter by their doctor in two phases, opt-out before and opt-in after introduction of the new Privacy Legislation in December 2001. Opt-out patients were contacted by researchers. Opt-in patients were contacted if patients responded by email, free telephone number or a reply-paid card.<\/jats:p><jats:p><jats:bold>Results:<\/jats:bold>Opt-in recruited fewer patients (47%; 43\/92) after invitation compared with opt-out (67%; 40\/60); (\u221220%; [\u22124% to \u221236%]). No proportional difference in recruitment was found between opt-in and opt-out groups varied by age, sex or socioeconomic status. The opt-in group had significantly more people in active decision-making roles (+30%; [10% to 50%]; p\u200a=\u200a0.003). Non-significant trends were observed towards opt-in being less likely to include people with lower education (\u221211.8%; [\u221230% to 6.4%]; p\u200a=\u200a0.13) and people who were not screened (\u221219.1%; [\u221240.1% to 1.9%]; p\u200a=\u200a0.08). Opt-in was more likely to recruit people with a family history of colorectal cancer (+12.7%; [\u22122.8%, 28.2%]; p\u200a=\u200a0.12).<\/jats:p><jats:p><jats:bold>Conclusions:<\/jats:bold>The number of participants required to be approached was markedly increased in opt-in recruitment. Existing participants (eg, screening attendees) with a vested interest such as increased risk, and those preferring an active role in health decision making and with less education were likely to be recruited in opt-in. Research costs and generalisability are affected by implementing privacy legislation.<\/jats:p>","DOI":"10.1136\/jme.2004.011320","type":"journal-article","created":{"date-parts":[[2006,7,28]],"date-time":"2006-07-28T17:27:04Z","timestamp":1154107624000},"page":"473-477","source":"Crossref","is-referenced-by-count":50,"title":["Impact of privacy legislation on the number and characteristics of people who are recruited for research: a randomised controlled trial"],"prefix":"10.1136","volume":"32","author":[{"given":"L","family":"Trevena","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L","family":"Irwig","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A","family":"Barratt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2006,7,28]]},"reference":[{"key":"2024052223315929000_32.8.473.1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM200201173460312"},{"key":"2024052223315929000_32.8.473.2","unstructured":"Medical Research Council. Personal information in medical research. In: eds Haines A, Ashcroff R, Coggon D et al. MRC ethics series. London: Medical Research Council, 2003."},{"key":"2024052223315929000_32.8.473.3","unstructured":"National Health and Medical Research Council. National statement on ethical conduct in research involving humans. Australia: National Health and Medical Research Council, 1999."},{"key":"2024052223315929000_32.8.473.4","unstructured":"Privacy Commission Canada. Privacy Legislation in Canada: Fact Sheet. http:\/\/www.privcomgc.ca\/fs-fi\/fs2001-02_e.asp (accessed 23 July 2004)."},{"key":"2024052223315929000_32.8.473.5","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM200201173460320"},{"key":"2024052223315929000_32.8.473.6","unstructured":"Office of Civil Rights. Medical privacy \u2013 national standards to protect the privacy of personal health information. Columbia: United States Department of Health and Human Services, 2003."},{"key":"2024052223315929000_32.8.473.7","doi-asserted-by":"publisher","DOI":"10.1161\/01.CIR.0000080642.35380.50"},{"key":"2024052223315929000_32.8.473.8","doi-asserted-by":"crossref","first-page":"1452","DOI":"10.1016\/S0140-6736(00)04660-2","volume":"357","year":"2001","journal-title":"Lancet"},{"key":"2024052223315929000_32.8.473.9","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.328.7447.1029"},{"key":"2024052223315929000_32.8.473.10","doi-asserted-by":"crossref","first-page":"307","DOI":"10.5694\/j.1326-5377.2004.tb05933.x","volume":"180","year":"2004","journal-title":"Med J Aust"},{"key":"2024052223315929000_32.8.473.11","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMsa031697"},{"key":"2024052223315929000_32.8.473.12","doi-asserted-by":"publisher","DOI":"10.1001\/archfami.9.10.1111"},{"key":"2024052223315929000_32.8.473.13","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.329.7460.277"},{"key":"2024052223315929000_32.8.473.14","unstructured":"National Health and Medical Research Council. Guidelines for the prevention, early detection and management of colorectal cancer. A guide for general practitioners. Australia: National Health and Medical Research Council, 2000."},{"key":"2024052223315929000_32.8.473.15","unstructured":"Australian Bureau of Statistics. Socioeconomic indexes for areas. In: Census of population and housing. Canberra: Australian Bureau of Statistics, 2001."},{"key":"2024052223315929000_32.8.473.16","doi-asserted-by":"publisher","DOI":"10.1016\/0895-4356(92)90110-9"},{"key":"2024052223315929000_32.8.473.17","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.38029.672662.AE"},{"key":"2024052223315929000_32.8.473.18","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2004.02.020"},{"key":"2024052223315929000_32.8.473.19","doi-asserted-by":"publisher","DOI":"10.1001\/jama.291.2.167"},{"key":"2024052223315929000_32.8.473.20","unstructured":"Niland J, Bennett C, Research Australia. Health and medical research public opinion poll 2004. Available at http:www.researchaustralia.org."}],"container-title":["Journal of Medical Ethics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/jme.2004.011320","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,5,23]],"date-time":"2024-05-23T07:53:23Z","timestamp":1716450803000},"score":1,"resource":{"primary":{"URL":"https:\/\/jme.bmj.com\/lookup\/doi\/10.1136\/jme.2004.011320"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2006,7,28]]},"references-count":20,"journal-issue":{"issue":"8","published-online":{"date-parts":[[2006,7,28]]},"published-print":{"date-parts":[[2006,8]]}},"alternative-id":["10.1136\/jme.2004.011320"],"URL":"https:\/\/doi.org\/10.1136\/jme.2004.011320","relation":{},"ISSN":["0306-6800","1473-4257"],"issn-type":[{"value":"0306-6800","type":"print"},{"value":"1473-4257","type":"electronic"}],"subject":[],"published":{"date-parts":[[2006,7,28]]}}}