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For sharing privacy-sensitive data, de-identification is commonly regarded as adequate for safeguarding privacy. Synthetic data is also being considered as a privacy-preserving alternative. Recent successes with numerical and tabular data generative models and the breakthroughs in large generative language models raise the question of whether synthetically generated clinical notes could be a viable alternative to real notes for research purposes. In this work, we demonstrated that (i) de-identification of real clinical notes does not protect records against a membership inference attack, (ii) proposed a novel approach to generate synthetic clinical notes using the current state-of-the-art large language models, (iii) evaluated the performance of the synthetically generated notes in a clinical domain task, and (iv) proposed a way to mount a membership inference attack where the target model is trained with synthetic data. We observed that when synthetically generated notes closely match the performance of real data, they also exhibit similar privacy concerns to the real data. Whether other approaches to synthetically generated clinical notes could offer better trade-offs and become a better alternative to sensitive real notes warrants further investigation. [ABSTRACT FROM AUTHOR]

The Global Alliance for Genomics and Health (GA4GH) proposes a data access policy model-"registered access"-to increase and improve access to data requiring an agreement to basic terms and conditions, such as the use of DNA sequence and health data in research. A registered access policy would enable a range of categories of users to gain access, starting with researchers and clinical care professionals. It would also facilitate general use and reuse of data but within the bounds of consent restrictions and other ethical obligations. In piloting registered access with the Scientific Demonstration data sharing projects of GA4GH, we provide additional ethics, policy and technical guidance to facilitate the implementation of this access model in an international setting.

Privacyis an important consideration when sharing clinical data, which often contain sensitive information. Adequate protection to safeguard patient privacy and to increase public trust in biomedical research is paramount. This review covers topics in policy and technology in the context of clinical data sharing. We review policy articles related to (a) the Common Rule, HIPAA privacy and security rules, and governance; (b) patients' viewpoints and consent practices; and (c) research ethics. We identify key features of the revised Common Rule and the most notable changes since its previous version. We address data governance for research in addition to the increasing emphasis on ethical and social implications. Research ethics topics include data sharing best practices, use of data from populations of low socioeconomic status (SES), recent updates to institutional review board (IRB) processes to protect human subjects' data, and important concerns about the limitations of current policies to address data deidentification. In terms of technology, we focus on articles that have applicability in real world health care applications: deidentification methods that comply with HIPAA, data anonymization approaches to satisfy well-acknowledged issues in deidentified data, encryption methods to safeguard data analyses, and privacy-preserving predictive modeling. The first two technology topics are mostly relevant to methodologies that attempt to sanitize structured or unstructured data. The third topic includes analysis on encrypted data. The last topic includes various mechanisms to build statistical models without sharing raw data.

Privacy concern in data sharing especially for health data gains particularly increasing attention nowadays. Now some patients agree to open their information for research use, which gives rise to a new question of how to effectively use the public information to better understand the private dataset without breaching privacy. In this paper, we specialize this question as selecting an optimal subset of the public dataset for M-estimators in the framework of differential privacy (DP) in [1]. From a perspective of non-interactive learning, we first construct the weighted private density estimation from the hybrid datasets under DP. Along the same line as [2], we analyze the accuracy of the DP M-estimators based on the hybrid datasets. Our main contributions are (i) we find that the bias-variance tradeoff in the performance of our M-estimators can be characterized in the sample size of the released dataset; (2) based on this finding, we develop an algorithm to select the optimal subset of the public dataset to release under DP. Our simulation studies and application to the real datasets confirm our findings and set a guideline in the real application.

BackgroundThe increased uptake of contralateral prophylactic mastectomy (CPM) among breast cancer patients remains poorly understood. We hypothesized that the increased rate of CPM is represented in conversations on an online breast cancer community and may contribute to patients choosing this operation.MethodsWe downloaded 328,763 posts and their dates of creation from an online breast cancer community from August 1, 2000, to May 22, 2016. We then performed a keyword search to identify posts which mentioned breast cancer surgeries: contralateral prophylactic mastectomy (n = 7095), mastectomy (n = 10,889), and lumpectomy (n = 9694). We graphed the percentage of CPM-related, lumpectomy-related, and mastectomy-related conversations over time. We also graphed the frequency of posts which mentioned multiple operations over time. Finally, we performed a qualitative study to identify factors influencing the observed trends.ResultsSurgically related posts (e.g., mentioning at least one operation) made up a small percentage (n = 27,678; 8.4%) of all posts on this community. The percentage of surgically related posts mentioning CPM was found to increase over time, whereas the percentage of surgically related posts mentioning mastectomy decreased over time. Among posts that mentioned more than one operation, mastectomy and lumpectomy were the procedures most commonly mentioned together, followed by mastectomy and CPM. There was no change over time in the frequency of posts that mentioned more than one operation. Our qualitative review found that most posts mentioning a single operation were unrelated to surgical decision-making; rather the operation was mentioned only in the context of the patient's cancer history. Conversely, the most posts mentioning multiple operations centered around the patients' surgical decision-making process.ConclusionsCPM-related conversation is increasing on this online breast cancer community, whereas mastectomy-related conversation is decreasing. These results appear to be primarily informed by patients reporting the types of operations they have undergone, and thus appear to correspond to the known increased uptake of CPM.

The Global Alliance for Genomics and Health (GA4GH) created the Beacon Project as a means of testing the willingness of data holders to share genetic data in the simplest technical context-a query for the presence of a specified nucleotide at a given position within a chromosome. Each participating site (or "beacon") is responsible for assuring that genomic data are exposed through the Beacon service only with the permission of the individual to whom the data pertains and in accordance with the GA4GH policy and standards.While recognizing the inference risks associated with large-scale data aggregation, and the fact that some beacons contain sensitive phenotypic associations that increase privacy risk, the GA4GH adjudged the risk of re-identification based on the binary yes/no allele-presence query responses as acceptable. However, recent work demonstrated that, given a beacon with specific characteristics (including relatively small sample size and an adversary who possesses an individual's whole genome sequence), the individual's membership in a beacon can be inferred through repeated queries for variants present in the individual's genome.In this paper, we propose three practical strategies for reducing re-identification risks in beacons. The first two strategies manipulate the beacon such that the presence of rare alleles is obscured; the third strategy budgets the number of accesses per user for each individual genome. Using a beacon containing data from the 1000 Genomes Project, we demonstrate that the proposed strategies can effectively reduce re-identification risk in beacon-like datasets.