Problems with IBM’s new “massive” research study

Healthcare IT News released an article about IBMs new research project: IBM launches massive health data research project

IBM plans to bring together personal data on individuals far beyond what is available in the health care system – including environmental and financial data on individuals — to “pinpoint incentives governments and businesses might offer” to patients to improve health. The plan is to first study childhood obesity.

The problem is IBM’s research project does not appear to start with obtaining informed consent from the individuals (or their parents) whose data will be collected and studied.

There is no mention of the legal or ethical authority or basis that permits IBM corporation to collect, analyze, and do research on so much sensitive personal information on individual children, in order to decide which “actions” to incentivize to improve a particular child’s health.

Yet, IBM’s research aims to help doctors treating specific individual patients: “all these complex issues need to meld into a single thread of conversation as I talk to my patient.”

The story mentions numerous groups IBM is working with, but it appears that no consumer, patient, child, or privacy advocacy organizations are “partners” in this massive research project.

More Quotes:
• project will combine and analyze massive data sources that have never before been integrated to simulate the cause-and-effect relationships between agriculture, transportation, city planning, eating and exercise habits, socio-economic status, family life, and more
• project could help pinpoint incentives governments and businesses might offer or what types of investments might be needed and how to prioritize them • it’s been impossible to understand and to quantify precisely how each factor in our environment plays a role
• IBM researchers said they will partner with public policy and food experts, medical clinicians, economists, simulation experts, industry leaders, universities and others in this collaborative endeavor
• In many cases, the data and models exist. They just need to be put together in a consumable way that shows the wider connections and potential actions that can enhance individual and community health,” said Paul Maglio, an IBM researcher.

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