Biobanking and Ethics: How Much Information Should Be Accessible?
Stephens, Ashley Lynne
The goal of this project is to re-evaluate patient awareness of Vanderbilt’s biobanking practices and whether patients are interested in having more information of the project. 61 exit-interviews were conducted with adult patients to answer the following questions: (1) Are Vanderbilt patients aware of BioVU? (2) Do patients actually know what BioVU is? (3) Do patients realize their participation in BioVU? (4) Do patients want more information? (5) If the information is made available to them, will they access it? The answers to these questions address the concerns that BioVU planners have expressed regarding the problem of confusion and help to illustrate the source of that confusion. It was hypothesized first that the confusion that BioVU planners cited as a reason to limit information is caused not by patients having too much information, but instead from having too little. In such case, is was hypothesized second that the confusion is a direct result of BioVU planners decisions on which information is or is not necessary for patients to have regarding their participation in the project. Using the results collected from the survey data, a constructive recommendation will be offered with the intention of improving Vanderbilt’s current biobanking practices.