Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Exploring perspectives of research stakeholders on sharing of identifiable participant information between research studies

Several clinical research projects have been implemented within the Malawi Liverpool Wellcome Trust which required access to identifiable participants’ information from current or previous studies. For example, some studies want to recruit participants who have been involved in previous studies and so need their contact information, or studies want to examine further issues among a group of previous participants and need information about, for example, their health or socioeconomic status.

 Sharing identifiable information between research projects may have benefits for research participants. With several research projects conducted in the same communities, participants may sometimes feel overwhelmed by having to complete the same questions or undergo the same research procedures. For example, participants in HIV related studies might be requested to supply blood samples or undergo confirmatory tests when invited to join a current study. Sharing data could reduce the burden on participants who are part of multiple studies by avoiding duplication.

 However, sharing identifiable personal information is at odds with the emphasis placed on confidentiality within international and national ethics guidelines. This creates a dilemma about whether and when sharing such data is acceptable. Current literature on data sharing tends to focus on de-identified data (for example in international archives), without discussing sharing participants’ identifiable information such as contact details between different research projects.

 The main of objective of this project is to understand what research stakeholders think about different research projects sharing identifiable personal information. This will be important to understand views on the balance of risks and benefits of sharing such data, as well as appropriate approaches if such information is shared. Hopefully this can support development of guidelines about sharing identifiable data between research projects.

 I am very excited that I have been successful with requests for ethical approvals for the project. Data collection just started and is on-going. What’s more exciting is to hear what people think about sharing participants’ identifying information, when and how such information can be shared.   

Views: 107

Comment by Dina Rippon on December 20, 2017 at 13:30

Dear Mack, thank you for sharing an update of your project! Congratulations with getting all the ethical approvals you needed. How long do you think it will take to do the data collection? I'll be very interested to hear what your interviewees say. Do keep us updated if you can. Thanks again!

Comment by Noni Mumba on December 21, 2017 at 5:30

Hi Mackwellings, you are answering a very important research question, which faces a lot of us in ethics of health research. Do you have community members as part of your respondents? Looking forward to hearing the results at the end. All the best!

Comment by Michael Parker on December 21, 2017 at 7:45

This is a great blog, Mack. Really interesting. It is such a fascinating topic. I'm looking forward to hearing more as you take it forward.

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