Between Access and Privacy: Challenges in Sharing Health Data
29 August 2018 (online)
Objective: To summarize notable research contributions published in 2017 on data sharing and privacy issues in medical informatics.
Methods: An extensive search of PubMed/Medline, Web of Science, ACM Digital Library, IEEE Xplore, and AAAI Digital Library was conducted to uncover the scientific contributions published in 2017 that addressed issues of biomedical data sharing, with a focus on data access and privacy. The selection process was based on three steps: (i) a selection of candidate best papers, (ii) the review of the candidate best papers by a team of international experts with respect to six predefined criteria, and (iii) the selection of the best papers by the editorial board of the Yearbook.
Results: Five best papers were selected. They cover the lifecycle of biomedical data collection, use, and sharing. The papers introduce 1) consenting strategies for emerging environments, 2) software for searching and retrieving datasets in organizationally distributed environments, 3) approaches to measure the privacy risks of sharing new data increasingly utilized in research and the clinical setting (e.g., genomic), 4) new cryptographic techniques for querying clinical data for cohort discovery, and 5) novel game theoretic strategies for publishing summary information about genome-phenome studies that balance the utility of the data with potential privacy risks to the participants of such studies.
Conclusion: The papers illustrated that there is no one-size-fitsall solution to privacy while working with biomedical data. At the same time, the papers show that there are opportunities for leveraging newly emerging technologies to enable data use while minimizing privacy risks.
- 1 Louis PCA. Essay on Clinical Instruction. Martin P. , trans. London: S. Highley; 1834
- 2 Osler W. The influence of Louis on American medicine. In: McGovern JP, Roland CG. , editors. The Collected Essays of Sir William Osler, vol. III. Birmingham, Ala.: Classics of Medicine Library; 1985. . p. 113-34 . Originally published in the Johns Hopkins Hospital Bulletin 1897;77-78(Au-gust-September):189-210
- 3 Gilbert M, Bonnell A, Farrell J, Haag D, Bondyra M, Unger D. , et al. Click yes to consent: incorporating informed. Homer N, Szelinger S, Redman M, Dug-gan D, Tembe W, Muehling J, Pearson JV, Stephan DA, Nelson SF, Craig DW. Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping arrays. PLoS Genetics 2008;4(8):e1000167.consent into an internet-based testing program for sexually transmitted and blood-borne infections. Int J Med Inform 2017; 105: 38-48
- 4 Ohno-Machado L, Sansone SA, Alter G, Fore I, Grethe J, Xu H. , et al. Finding useful data across multiple biomedical data repositories using DataMed. Nat Genet 2017; 49 (06) 816-9
- 5 Humbert M, Ayday E, Hubaux JP, Telenti A. Quantifying interdependent risks in genomic privacy. ACM Transactions on Privacy and Security 2017; 20 (01) 3
- 6 Yuan J, Malin B, Modave F, Guo Y, Hogan WR, Shenkman E. , et al. Towards a privacy preserving cohort discovery framework for clinical research networks. J Biomed Inform 2017; 66: 42-51
- 7 Homer N, Szelinger S, Redman M, Duggan D, Tembe W, Muehling J. , et al. Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping arrays. PLoS Genet 2008; 4 (08) e1000167
- 8 Wan Z, Vorobeychik Y, Xia W, Clayton EW, Kantarcioglu M, Malin B. Expanding access to large-scale genomic data while promoting privacy: a game theoretic approach. Am J Hum Genet 2017; 100 (02) 316-22
- 9 St John ER, Scott AJ, Irvine TE, Pakzad F, Leff DR, Layer GT. Completion of hand-written surgical consent forms is frequently suboptimal and could be improved by using electronically generated, procedure-specific forms. Surgeon 2017; 15 (04) 190-5
- 10 Hassidim A, Korach T, Shreberk-Hassidim R, Thomaidou E, Uzefovsky F, Ayal S. , et al. Prevalence of sharing access credentials in electronic medical records. Healthc Inform Res 2017; 23 (03) 176-82
- 11 Brandizi M, Melnichuk O, Bild R, Kohlmayer F, Rodriguez-Castro B, Spengler H. , et al. Orchestrating differential data access for translational research: a pilot implementation. BMC Med Inform Decis Mak 2017; 17 (01) 30
- 12 Tafti AP, LaRose E, Badger JC, Kleiman R, Peissig P. Machine learning-as-a-service and its application to medical informatics. Proc International Conference on Machine Learning and Data Mining in Pattern Recognition 2017; 206-19
- 13 Zhu H, Liu X, Lu R, Li H. Eficient and privacy-preserving online medical prediagnosis framework using nonlinear SVM. IEEE J Biomed Health Inform 2017; 21 (03) 838-50
- 14 Cetin GS, Chen H, Laine K, Lauter K, Rindal P, Xia Y. Private queries on encrypted genomic data. BMC Med Genomics 2017; 10 (Suppl. 02) 45
- 15 Brown AP, Borgs C, Randall SM, Schnell R. Evaluating privacy-preserving record linkage using cryptographic long-term keys and multibit trees on large medical datasets. BMC Med Inform Dec Mak 2017; 17: 83
- 16 Raisaro JL, Tramer F, Ji Z, Bu D, Zhao Y, Carey K, Lloyd D. , et al. Addressing Beacon re-identification attacks: quantification and mitigation of privacy risks. J Am Med Inform Assoc 2017; 24 (04) 799-805
- 17 Prasser F, Gaupp J, Wan Z, Xia W, Vorobeychik Y, Kantarcioglu M. , et al. An open source tool for game theoretic health data de-identification. AMIA Annu Symp Proc 2017; 1430-9