Wednesday, April 21, 2010

If biology is an information science, then information ethics needs to expand.

If biology is an information science, then information ethics needs to expand.  What does this mean?  For me, it means building new courses from K-grad school and into public and popular discourses as well as into the preparation of professionals in medicine, healthcare, geriatric studies, and so many other fields.  As patients and citizens, we are in charge of our health and lives.  With an aging population and so many critical decisions to be made by individuals and families, a new initiative in information ethics is needed to describe the issues, the methods, and to support the education and outreach needed to make these issues understandable and as manageable as possible.  From the ownership of a baby's DNA to ethical wills and advanced directives, the human lifecycle and the information lifecycle are both important.  Electronic medical records and patient's right to privacy both have economic implications. 
Key categories for information ethics research:
  • Access
  • Ownership
  • Privacy
  • Security, and
  • Community map to the ethics of  life, healthcare, and issues surrounding the end-of-life and death.  
  • Who has access to our information, DNA, risk factors, prior conditions?
  • Who has access to information kept by healthcare institutions?
  • Can insurance companies deny treatment?  How?
  • Do we have ownership rights or moral rights to our own information?
  • Do parents own their children's information?
  • Is privacy obsolete?
  • What is the role of the government in the access and ownership of medical records?
  • What consumer access should patients have to medical research?
  • Is there a right to healthcare?  Universal access?
  • Much more

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