Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives.

While the majority of population-level genome sequencing initiatives claim to follow the principles of informed consent, the requirements for informed consent have not been-well defined in this context. In fact, the implementation of informed consent differs greatly across these initiatives - spanning broad consent, blanket consent, and tiered consent among others. As such, this calls for an investigation into the requirements for consent to be "informed" in the context of population genomics.

Privacy-Preserving Analysis of Distributed Biomedical Data: Designing Efficient and Secure Multiparty Computations Using Distributed Statistical Learning Theory.

Background: Biomedical research often requires large cohorts and necessitates the sharing of biomedical data with researchers around the world, which raises many privacy, ethical, and legal concerns. In the face of these concerns, privacy experts are trying to explore approaches to analyzing the distributed data while protecting its privacy. Many of these approaches are based on secure multiparty computations (SMCs).

Informed Consent in Biomedical Research.

Informed consent is the result of tumultuous events in both the clinical and research arenas over the last 100 years. Throughout this time, the notion of informed consent has shifted tremendously, both due to advances in medicine, as well as the type of data being gathered. As such, informed consent has misaligned with the goals of medical research.

The development of large-scale de-identified biomedical databases in the age of genomics-principles and challenges.

Contemporary biomedical databases include a wide range of information types from various observational and instrumental sources. Among the most important features that unite biomedical databases across the field are high volume of information and high potential to cause damage through data corruption, loss of performance, and loss of patient privacy. Thus, issues of data governance and privacy protection are essential for the construction of data depositories for biomedical research and healthcare.

A risk-based framework for biomedical data sharing.

The problem of biomedical data sharing is a form of gambling; on one hand it incurs the risk of privacy violations and on the other it stands to profit from knowledge discovery. In general, the risk of granting data access to a user depends heavily upon the data requested, the purpose for the access, the user requesting the data (user motives) and the security of the user's environment. While traditional manual biomedical data sharing processes (based on institutional review boards) are lengthy and demanding, the automated ones (known as honest broker systems) disregard the individualities of different requests and offer "one-size-fits-all" solutions to all data requestors.

Evaluating the risk of patient re-identification from adverse drug event reports.

Background: Our objective was to develop a model for measuring re-identification risk that more closely mimics the behaviour of an adversary by accounting for repeated attempts at matching and verification of matches, and apply it to evaluate the risk of re-identification for Canada's post-marketing adverse drug event database (ADE).Re-identification is only demonstrably plausible for deaths in ADE. A matching experiment between ADE records and virtual obituaries constructed from Statistics Canada vital statistics was simulated.

Estimating the re-identification risk of clinical data sets.

Background: De-identification is a common way to protect patient privacy when disclosing clinical data for secondary purposes, such as research. One type of attack that de-identification protects against is linking the disclosed patient data with public and semi-public registries. Uniqueness is a commonly used measure of re-identification risk under this attack.

Evaluating the Risk of Re-identification of Patients from Hospital Prescription Records.

Background: Pharmacies often provide prescription records to private research firms, on the assumption that these records are de-identified (i.e., identifying information has been removed).

Protecting privacy using k-anonymity.

Objective: There is increasing pressure to share health information and even make it publicly available. However, such disclosures of personal health information raise serious privacy concerns. To alleviate such concerns, it is possible to anonymize the data before disclosure.