Informatics and Ethics

Notes from module 8 of the Interprofessional Health Informatics course I’m working on (plus side reading that I did to fill in some blanks/learn more about some things mentioned in the course).

• “knowledge is power” – Sir Francis Bacon, 1597
• we should use data, information, and knowledge ethically
• each profession has its own code of ethics – how does it relate to informatics?
• principles of information ethics:
  • respect for information property
  • respect for privacy
  • fair representation
  • non-maleficence
• International Medical Informatics Association (IMIA) Code of Ethics for Health Information Professional
  • fundamental ethics principles
    1. autonomy (“all persons have a fundamental right to self-determination”)
    2. equality and justice (“all persons are equal as persona and have a right to be treated accordingly”)
    3. beneficence (do good)
    4. non-malfeasance (do no harm, prevent harm)
    5. impossibility (“all rights and duties subject to the condition that it is possible to meet them under the circumstances that obtain”).
    6. integrity (fulfill your obligation to the best of your ability)
  • general principles of informatics ethics:
    1. information-privacy and disposition (“all persons have a fundamental right to privacy, and hence to control over the collection, storage, access, use, communication, manipulation, and disposition of data about themselves”)
    2. openness (you should know when data is collected/stored/etc. about you)
    3. security (data should be protected)
    4. access (you should have access to data about you and the right to correct it)
    5. legitimate infringement (“The fundamental right of control over the collection, storage, access, use, manipulation, communication and disposition of personal data is conditioned only by the legitimate, appropriate and relevant data-needs of a free, responsible and democratic society, and by the equal and competing rights of other persons.”
    6. least intrusive alternative (infringement on privacy rights and right to control your own data “may only occur in the least intrusive fashion and with a minimum of interference with the rights of the affected person”)
    7. accountability (infringement on privacy rights and right to control your own data “must be justified to the affected person in good time and in an appropriate fashion”
  • all of the above quotations come from the code, which is linked to above)
  • the code also lists a bunch of duties of health information professional
• information in an EHR is private
• information in an EHR “forms the basis of decisions that have a profound impact on the welfare of the patient”
• EHR data guide policy
• there are information privacy laws – you need to know them in your own jurisdiction
  • E-Health (Personal Health Information Access and Protection of Privacy) Act
  • Freedom of Information and Protection of Privacy Act (“FIPPA”) and the Personal Information Protection Act (“PIPA”).

Image credit: Posted on Flickr by Kent State University with a Creative Commons license.