Editor—Attitudes to privacy in health research are often the subject of debate, however, surprisingly little data exist with which to guide policy. Addressing this gap, Barrett et al recently reported overwhelming support among the British public for legislation to make cancer registration compulsory and found high levels of acceptance for registries being used as sampling frames for research.1 Is this tolerance of research using sensitive health data a peculiarly British trait?
In 2004 the National Health and Medical Research Council (NHMRC) of Australia undertook surveys of seven stakeholder groups (one of which was the Australian general public) to investigate attitudes to privacy in the realm of health and medical research.2,3 In a random telephone survey 192 out of 301 survey respondents (64%) were in favour of health databases being used for approved research purposes, and a similar proportion supported health research involving record linkage between two or more databases. Thus, most respondents were not sufficiently concerned by privacy to prevent research activities. Indeed, more respondents reported more concern about the confidentiality of their financial information (147 (49%)) than their health information (94 (33%)).
Public attitudes to the use of disease registers for sampling potential study participants was explored through a hypothetical scenario in which researchers investigating hepatitis C sought to make contact with patients listed on a clinical register. When asked to choose their preferred mode of contact, 269 (89%) indicated that they wanted the initial approach to come from their general practitioner or clinic; only 29 (10%) preferred direct contact from researchers.
These Australian data support Barrett et al's finding of widespread public support for the use of health information for approved research purposes.1 They also underscore the high level of trust that patients place in their clinical caregivers to protect their interests in matters of clinical research.
Competing interests: DCW is a member of the NHMRC Working Committee on Privacy, which is chaired by DH. CC is director of the NHMRC Centre for Health Advice, Policy and Ethics, which commissioned this research.
References
- 1.Barrett G, Cassell JA, Peacock JL, Coleman MP. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. BMJ 2006;332(7549): 1068-72. (6 May.) [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Whiteman D. Privacy and medical research. Intern Med J 2005;35: 441-2. [DOI] [PubMed] [Google Scholar]
- 3.National Health and Medical Research Council of Australia. The impact of privacy regulation on NHMRC stakeholders. Canberra: 2004. www.nhmrc.gov.au/about/privacy.htm (accessed 15 May 2006).