Big Data, Health Law, and Bioethics

Privacy and Security and Networks, the Internet, and Cloud Computing

Article Snapshot

Author(s)

I. Glenn Cohen, Holly Fernandez Lynch, Urs Gasser and Effy Vayena

Source

Cambridge University Press, 2018

Summary

Big data is expected to transform health care and medicine. Today’s ethical guidelines and laws may not adequately protect users against threats to privacy and the risk of discrimination. Third-party firms may function as go-betweens for patients and health care providers.

Policy Relevance

Policymakers must innovate to protect against threats to privacy and fairness arising from health big data. New laws or ethical rules may be needed.

Main Points

  • Health and biomedicine will be greatly affected by big data.
     
    • The sequencing of the human genome will lead to many new methods of diagnosis and treatment.
       
    • Health-related data can be derived from nonmedical sources such as Facebook "likes," retail purchases, and mobile phone location data.
       
  • New uses of Big Data in health care are disrupting norms for autonomy and privacy.
     
    • Users of social media are not aware that their data can be used for health purposes.
       
    • Users cannot be properly informed of unknown future uses of their data.
       
    • Regulations and ethical guidelines that govern health researchers may be impossible to comply with, or ambiguous.
       
  • Some market-based approaches, which allow different privacy and ethical standards to compete, might be helpful in addressing privacy issues; for example, different third-party auditing systems could compete to certify compliance of health data systems with privacy rules.
     
  • Health care big data systems blur distinctions between heavily regulated traditional medical providers (such as hospitals) and unregulated providers (such as grocery stores); legislators can develop broad regulatory systems appropriate to a world where it is unclear what is health data and what is not.
     
  • The False Claims Act is the federal government's main tool for combatting health care fraud; some argue that this law should be applicable to the manipulation of big data to obscure information, discouraging the submission of claims.
     
  • New uses of big data in health care could lead to discrimination against people who are at risk of becoming sick in the future; the American with Disabilities Act could be expanded to bar such discrimination.
     
  • A third-party clearinghouse could standardize health care data across multiple Internet of Things (IoT) devices used in health care (such as smartphones and wearables that track patient health), while regulators strengthen privacy and security rules for such devices.
     
  • Third party data auditors could be hired by individuals to audit the use of their data by health care providers and other firms, to increase transparency and accountability for health big data.
     

 

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