Frequently Asked Questions
Why is genomic privacy not a pure socioeconomic, ethical, and regulatory issue?
Genomic privacy is a complex problem with many different factors. In time, the regulations evolve to account for the socioeconomic and ethical factors. Regulatory guidelines in genomics research have evolved in response to privacy threats e.g. Database of Genotypes and Phenotypes (dbGaP). We expect the regulatory guidelines to continue evolving as the risks are identified. Development in security and privacy technologies and applications (e.g. encryption) impact these regulations. Over the last few years, research in genomic privacy has accelerated. We believe that there is now sufficient steam in this research to impact practical application development. In time, we expect these applications to make their way into regulations.
Is my privacy protected if I use a Direct-To-Consumer (DTC) Genetic Testing product?
When you go for a genetic testing at the hospital, your doctor or genetic counselor can help you make an informed consent. Your results are clearly being shared with your insurance provider and other caretakers within the healthcare system. DTC Genetic Testing companies have complex privacy rules that appear in fine print as Terms of Use, Terms of Service, Terms and Conditions, Privacy Policy or Privacy Statement. At the end of the day, you will need to make an informed decision based on the information you are provided in the fine print. (more)
What is the risk of health information leak in this world where people are voluntarily placing personal information in public space?
There are laws in place, Genomic Information Nondiscrimination Act (GINA), that prevent against discrimination based on genetic information. Genetic testing when done within the confines of a clinical care must follow strict Health Insurance Portability and Accountability Act (HIPAA) guidelines. Within certain established parameters, the risk is well defined. Like any risk-benefit analysis, an individual must make an informed decision. A few pieces of information to keep in mind while doing this risk-benefit analysis are - a) as research grows, more of our genetic markers will have established correlation with disease risks, and b) genetic data is long lived and is shared between current family members and progeny.
I am contributing to a genetic research study at Stanford. Is my data safe?
Stanford School of Medicine (SoM) takes data security and patient privacy very seriously. Your research participation is governed by Institutional Review Board (IRB) that requires researchers to follow SoM data security guidelines (more).
Will Precision Medicine Initiative help the cause of collaborative genomics research?
Precision Medicine Initiative plans to pioneer a new model of patient powered research. Obama Administration will call on academic medical centers, researchers, foundations, privacy experts, medical ethicists, and medical product innovators to lay the foundation for this effort, including developing new approaches to patient participation and empowerment.
In time, with development of interoperability standards, patients will have better access to their own data and be able to share their data in specific research studies more transparently.