Brain banks. Do our patients know about them?

Over the last few years, advances in biomedical research have led to the creation of a brain bank network in Spain. These banks are distributed throughout the country in Murcia, Andalusia, Madrid, Catalonia, Navarre, the Basque Country, and Galicia. If these banks are to receive donations, our patients must be informed about the purpose and relevance of brain banks.^1,2 But what do they think about them? Do they consider them useful? Have they even heard of them? The search for answers to these questions led us to frame our study's objectives as follows: (a) evaluating to what extent our patients are aware of brain banks and understand their purpose, and (b) ascertaining patients’ attitudes (acceptance or rejection) regarding such banks. Our cross-sectional descriptive study was conducted in an urban health centre in the province of Murcia. Four residents in family and community medicine and their 4 advisors participated as researchers in our study, which was conducted between October and December 2011. Patients were randomly selected from those who came to the clinic during the study period. A total of 100 patients were included in the study sample. The variables analysed along with patients’ responses were as follows:

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  Age: between 18 and 35, 12%. Between 35 and 50, 28%. Between 51 and 70, 34%. Older than 70, 26%.

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  Sex: men, 32%; women, 68%.

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  Marital status: single 12%, married 63%, life partner 8%, separated/divorced 9%, and widowed 8%.

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  Employment status: 41% actively employed; 59% not actively employed.

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  Chronic diseases: 54% yes, 46% no.

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  Do you know what a brain bank is? Of the total, 32% could provide an answer and 68% could not.

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  Patients who were able to answer were then asked the following questions: (a) How did you hear about them? Responses: Internet (9%), mass media (60%), through friends (12%), through health professionals (16%), and by other means (3%). (b) What is the purpose of these brain banks? Responses: To store brains for transplants (0%), to examine them in order to develop better treatments for neurological diseases (97%), to create collections (0%), and other uses (3%).

  (NB: those patients who did not know about brain banks were briefly informed about them before continuing with the questionnaire).

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  Do you think brain banks are useful? Yes (92%), no (2%), and no opinion (6%).

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  Do any of your family members suffer from dementia? Yes (32%), no (68%).

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  Would you donate your brain if you were asked to do so? Yes (59%), no (17%), undecided (24%).

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  What is the main reason why you would or would not donate your brain? Among patients favourable to brain donation, 80% would do so to promote research and the other 20%, as an act of kindness and solidarity. Patients opposed to donating their brains cited fear of their bodies being manipulated even after death (64%), religious reasons (18%), or simply having no inclination to do so (18%).

This study reveals patients’ current attitudes regarding brain banks.^3–5 It must be noted that only a third of our patients had heard of them, meaning that health professionals and the media should increase their efforts to provide information about the importance and purpose of brain banks. Patients do have a very positive opinion of their relevance, since 90% believe that these facilities are useful. In contrast, only slightly more than half of our patients would donate their brains if they were asked to do so. This percentage would probably be higher if brain banks received more publicity and if the population were better informed about their importance for research on neurodegenerative diseases. It is an interesting fact that most of our patients think brain banks are useful; however, far fewer of them would be willing to donate their brains. In summary, we can state that while brain donation is perceived as positive by our patients, they have received very little information about this practice.