Qualitative content analysis on different ways of explaining data and sample sharing
| Data or sample sharing aspect | Description | Common examples taken from the consent documents |
|---|---|---|
| Authority deciding on reuse of samples | Research ethics committees that approved original study (4 projects) | These samples and related information may be used for other research studies in our country or abroad, pending ethical approval by our ethics committee |
| Special committee, group of investigators or more broadly ‘permission from the biobank’ (4 projects) | A special committee will look at each request to study samples to find out what the researchers want to do and how they will protect your rights. | |
| Funding agency (1 project) | The control over samples you donate will be held by the funding agency. | |
| Ministry of Health (1 collaborating site in a project) | L'accès et l'utilisation de ces échantillons ne pourront se faire sans l'accord du Ministère de la Santé de notre pays (translation: Access and use of samples will have to be approved by the Ministry of Health) | |
| Restrictions on secondary use | Only for ‘scientific’ or ‘medical’ research (5 projects) | Although the study you are being asked to participate in is related to (Disease X), other scientists may like to use your sample to study other diseases. They will need to agree only to use the data for scientific research. |
| No restrictions (7 projects) | Investigators from all over the world can use these samples for their research; samples may be used to study other diseases. | |
| Specific diseases (1 project and 1 collaborating site in a project) | les échantillons vont être conservés en attendant leur utilisation par les chercheurs et projets de recherches associés à notre projet (translation: (the samples) will be stored for reuse by researchers and projects associated with our project) | |
| Reasons for storing | To boost the power of studies and research (2 projects) | To do more powerful research, it is helpful for researchers to share information they get from studying human samples |
| Because this is now best practice (4 projects) | It is now common that genetic information is shared with researchers around the world, for other research in the future | |
| Because it is the right thing to do (2 projects) | A goal of H3Africa is to create a way for investigators to share and learn from each other, especially within Africa. One of the best ways to do this is for scientists to share research information | |
| Definitions of Biobanks | (7 projects) | The storage place also known as a biorepository is a collection of samples and health information from many people, stored for study. A sophisticated blood storage facility. Some of the samples may be stored as part of a big collection or ‘biobank’.‘A biobank is a place that stores samples and information so that researchers on this study and other scientists can use them in future unspecified research projects” |