As the sharing of large-scale medical image datasets becomes more common, the importance of respecting individual preferences while protecting privacy and security has moved to the forefront. The NIDCR has a particular interest in addressing these concerns, because their funded research portfolio includes projects that collect facial image datasets. The human face is inherently identifiable and recent work has shown that, under limited circumstances, individuals can be reidentified even from seemingly anonymous MR images. In many cases, facial image datasets are connected to genomic or other health data (e.g. FaceBase). This trend is likely to expand considerably as research facilitated by apps and devices will enable selfies and other facial images to become new ?health resources.? Moreover, the way in which biometric data is protected varies widely from state to state, making a uniform research participant understanding and experience challenging. It is therefore critical to understand the perspectives of the US public and research professionals as well as the current and emerging state of relevant biometric data protection policies. The proposed supplement was designed to be responsive to NIDCR?s stated focus on ?Privacy, confidentiality, data re-use and other ethical issues with clinical and non-clinical data, particularly large scale facial image data and omics data.? ELSI research on this topic is currently lacking. Accordingly, the overarching goal of this supplement is to assess awareness, attitudes, and concerns specifically related to facial imaging research and investigate data privacy and governance issues relevant to datasets containing facial images. We will accomplish this goal though the following three aims: (1) To assess the status of biometric data protections for facial imaging throughout the United States through legal mapping. (2) To explore facial imaging privacy perspectives held by the public and research professionals in the United States through online surveys. (3) To promote improved informed consent approaches and responsible data stewardship for research involving facial imaging through preparation of discussion draft guidance for use in future ELSI Research. We expect that the data generated from this proposal will inform data governance guidelines and hopefully improve the informed consent process for research involving facial imaging.
As the sharing of large-scale medical image datasets becomes more common, the importance of respecting individual preferences while protecting privacy and security has moved to the forefront. The issues are even more critical when these datasets contain facial images, which raises the risk of inappropriate re-identification. This proposal will assess public awareness, attitudes, and concerns specifically related to facial imaging research and investigate data privacy and governance issues relevant to datasets containing facial images.
|Indencleef, Karlijne; Roosenboom, Jasmien; Hoskens, Hanne et al. (2018) Six NSCL/P Loci Show Associations With Normal-Range Craniofacial Variation. Front Genet 9:502|
|Roosenboom, Jasmien; Lee, Myoung Keun; Hecht, Jacqueline T et al. (2018) Mapping genetic variants for cranial vault shape in humans. PLoS One 13:e0196148|
|Claes, Peter; Roosenboom, Jasmien; White, Julie D et al. (2018) Genome-wide mapping of global-to-local genetic effects on human facial shape. Nat Genet 50:414-423|
|Hoskens, Hanne; Li, Jiarui; Indencleef, Karlijne et al. (2018) Spatially Dense 3D Facial Heritability and Modules of Co-heritability in a Father-Offspring Design. Front Genet 9:554|
|Shaffer, John R; Li, Jinxi; Lee, Myoung Keun et al. (2017) Multiethnic GWAS Reveals Polygenic Architecture of Earlobe Attachment. Am J Hum Genet 101:913-924|