Lyndal Trevena
Impact of privacy legislation on the number and characteristics of people who are recruited for research: a randomised controlled trial
University of Sydney
privacy laws recently created restrictions researchers approach study participantsin randomised trial 152 patients 5074 years old family practice 60 randomly selected optout 92 optin methods patients sent introductory letter doctor two phases optout optin introduction new privacy legislation december 2001 optout patients contacted researchers optin patients contacted patients responded email free telephone number replypaid cardoptin recruited fewer patients 47 4392 invitation compared optout 67 4060 20 4 36 proportional difference recruitment found optin optout groups varied age sex socioeconomic status optin group significantly people active decisionmaking roles 30 10 50 p 0003 nonsignificant trends observed towards optin less likely include people lower education 118 30 64 p 013 people screened 191 401 19 p 008 optin likely recruit people family history colorectal cancer 127 28 282 p 012the number participants required approached markedly increased optin recruitment existing participants eg screening attendees vested interest increased risk preferring active role health decision making less education likely recruited optin research costs generalisability affected implementing privacy legislation