What do Australians think about privacy and participation in epidemiological research?

Funded by: NHMRC

This project sought to establish the views of the general population and of members of an existing cohort and a case control study about the relationship between protecting privacy and conducting epidemiological research. Our hypothesis is that epidemiological research is impeded because of a belief that is not evidence based, that the Australian community places a higher value upon privacy than on research.

Objectives

1.To determine views of the general population and specific population subgroups around privacy in epidemiological research by establishing their understanding and expectations of: the importance of protecting privacy in the context of epidemiological research.

  • when it is appropriate to expect researchers to obtain consent to access personal information and when this is “impracticable”.
  • the balance to be struck between the public interest in protecting privacy and public benefit in conducting epidemiological research.
  • the potential use of data supplied in health studies and linkage with other established sources of health information.
  • the publication and dissemination of the findings of health studies.

2. To identify factors that affect willingness to participate in observational epidemiological studies.

3. To determine whether the conservatism to be found in legislation, guidelines and decisions of Human Research Ethics Committees (HRECs) concerning the appropriate balance between protecting privacy and the public interest is truly consistent with public expectations.

4. To develop peer reviewed publications and guidelines based on our findings for epidemiological researchers and members of HRECs with respect to current law and ethical guidelines, and the recommendations contained in the recent Australian Law Reform Commission Review of Australian Privacy Law.

5. To identify current best practice in privacy protection in epidemiological surveys.

Chief Investigators

  • Assoc Prof Bebe Loff
  • Dr Deborah Zion
  • Assoc Prof Deborah Glass
  • Assoc Prof Lin Fritschi (Western Australian Institute for Medical Research)
  • Dr Helen Kelsall
  • Dr Ngiare Brown (Menzies School of Health Research)

Publications

Slegers C, Zion D, GLASS DC, KELSALL H, Fritschi L, Brown N, Loff B. Why do people participate in epidemiological research? Journal of Bioethical Inquiry 2015; DOI 10.1007/s11673-015-9611-2.

Loff B, Campbell E, GLASS DC, KELSALL HL, Slegers C, Zion D, Brown N, Fritschi L. Access to the Commonwealth Electoral Roll for Medical Research Medical Journal of Australia 2013;199(2):128-130.

Fritschi L, KELSALL HL, Loff B, Slegers C, Zion D, GLASS DC. A cross-sectional survey to investigate community understanding of medical research ethics committees. Journal of Medical Ethics 2015;41:545–548.