Developing model biobanking consent language: what matters to prospective participants?

• DOI: 10.1186/s12874-020-01001-2
• Publication Date: 2020-05-15T11:35:32Z
• Authors: Laura M. Beskow; Catherine M. Hamm...; Kathleen M. Brels...
• Keywords: Research Ethics

Abstract Background Efforts to improve informed consent have led calls for providing information a reasonable person would want have, in way that facilitates understanding of the reasons why one might or not participate. At same time, advances large-scale genomic research expanded both opportunities and risks participants, families, communities. To advance use effective materials reflect this landscape, we used empirical data develop model language, as well brief questions assist people thinking about their own values relative participation. Methods We conducted in-person interviews gather preliminary input on these from diverse sample ( n = 32) general population Nashville, Tennessee. asked them highlight they found especially reassuring concerning, hypothetical willingness participate, opinions questions. Results Consent most often highlighted included purpose biobank, existence composition multidisciplinary oversight committee, importance participants’ privacy efforts protect it, controlled access scientific database. Information concerning deposition publicly accessible database, risk unintended data, potential non-research medical record general. Seventy-five percent participants indicated initial participate biobank; decreased 66% more closely considered over course interview. A large majority rated helpful. Conclusions These results are consistent with other public perspectives biobanking cohort studies, suggesting our language effectively captures commonly expressed against Our study enriches literature by connecting specific form disclosures qualitative regarding what why. Interventions facilitate individuals’ closer engagement may result participation decisions aligned values.