advice to researchers

5 Storage of Data and Clinical Samples

This is a particularly important issue due to cultural sensitivities and to the history of past abuses by some unethical researchers.

5.1 Have you fully explained the purposes and limits for which data and clinical samples are being collected for the project?

  • Further permission will need to be sought if blood or tissue samples, or data collected from surveys, interviews or other social science methods, are to be used for any purpose other than those outlined in your original proposal.
  • The storage, return or destruction of data should be negotiated with the community before data collection begins.

 

5.2 Have you negotiated agreement with the community concerning the ownership, management and return of identifiable raw data or sample(s), and secure storage?  

  • This agreement will probably need to be in writing such as in the form of a research contract or Project Agreement.

5.3 Who will have individual access to the data and/or samples?

  • In most cases only the researchers or clinicians would have access to individual data or samples. However, it is quite common for researchers to offer to provide participants with transcripts of their own interviews.

5.4 How and where will original data and clinical samples be stored?

  • Most university and hospital ethics committees have specific guidelines about how data and confidentiality are to be protected by being locked in filing cabinets or in password protected computer files for a period of 5 to 7 years.

 

Resources: Storage of Data and Clinical Samples

Australian Copyright vs. Indigenous Intellectual and Cultural Property Rights: a discussion paper

Heiss, Anita, The Australian Society of Authors, Sydney, NSW, 2001

http://www.asauthors.org/lib/pdf/Heiss_Australian_Copyright_vs_Indigenous_Intellectual_and_Cultural_PropertyRights_.pdf

 

Our Culture: Our Future – A Report on Australian Indigenous Cultural and Intellectual Property Rights

Janke, Terri, Michael Frankel and Associates, commissioned for Australian institute of Aboriginal and Torres Strait Islander Affairs (AIATSIS) and the Aboriginal and Torres Strait Islander Commission (ATSIC), Sydney, NSW, 1998

http://www.austlii.edu.au/au/journals/AILR/1999/51.html

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