Private Medical Data Is For Sale – and It’s Driving a Business Worth Billions

Private Medical Data Is For Sale – and It’s Driving a Business Worth Billions

Published By: The Guardian, 1/10/2017

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Summary

Private medical data is a multi-million dollar industry that is growing rapidly, according to Adam Tanner at Harvard’s Institute for Quantitative Social Science. When medical data is initially sold to big data miners, it may be referred to only by unidentifiable numbers. However, data miners can re-identify patients by cross-referencing the medical data with data collected from other sources.

Flesch-Kincaid Grade Level of Article: 9.9

Extended Discussion Questions

  • What are the pros and cons of this type of data being available on the market?
    • Pros and cons for medical researchers?
    • For marketers of medical products?
    • For patients?
  • U.S. courts have upheld data brokers’ right to buy and sell medical data — even de-anonymized medical data — based on the right to free speech. However, medical privacy laws like HIPAA do prohibit medical providers themselves from selling non-anonymized data.
    • Why do you think the two situations are treated differently under the law?
    • Do you think the two situations should be treated the same? If so, which way should it go? Why?
  • In general, do you think businesses should be required to ask patients’ permission to use their medical data?
    • If yes: If a data broker de-anonymizes a medical profile, how far should they be required to go in figuring out how to contact that person and ask their permission?

Relating This Story to the CSP Curriculum Framework

Global Impact Learning Objectives:

  • LO 7.3.1 Analyze the beneficial and harmful effects of computing.

Global Impact Essential Knowledge:

  • EK 7.3.1A Innovations enabled by computing raise legal and ethical concerns.
  • EK 7.3.1G Privacy and security concerns arise in the development and use of computational systems and artifacts.
  • EK 7.3.1H Aggregation of information, such as geolocation, cookies, and browsing history, raises privacy and security concerns.
  • EK 7.3.1J Technology enables the collection, use, and exploitation of information about, by, and for individuals, groups, and institutions.
  • EK 7.3.1L Commercial and governmental curation of information may be exploited if privacy and other protections are ignored.

Other CSP Big Ideas:

  • Idea 3 Data and Information

Banner Image: “Network Visualization – Violet – Offset Crop”, derivative work by ICSI. New license: CC BY-SA 4.0. Based on “Social Network Analysis Visualization” by Martin Grandjean. Original license: CC BY-SA 3.0

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