AFFIRMATIVE MEDICAL INHERENCY 231
CURRENT CONSENT FORMS FAIL TO PROTECT MEDICAL PRIVACY
CONSENT FORMS DO NOT FULLY INFORM PATIENTS ON THE ULTIMATE USE OF DATA
JANE E. ALLEN, Los Angeles Times, February 8, 1999, SECTION: Health; Part S; Page 1; TITLE: A NEW PUSH IS ON FOR PATIENTS' PRIVACY LAW// acs-EE2001
When a patient enters a clinical trial of an experimental drug or procedure, he or she signs a consent form but may not realize how many parties have access to results and laboratory samples for years afterward.
INFORMED CONSENT IS THE CURRENT MODEL FOR PROTECTING PATIENT PRIVACY. BUT IT FAILS
Robert Gellman, Privacy and Information Policy Consultant and Fellow of the Cyberspace Law Institute, "Personal, Legislative, and Technical Privacy Choices," VISIONS OF PRIVACY: Policy Choices for the Digital Age, 1999, EE2001 -JGM, p. 132
Given this welter of institutions and laws, how is the disclosure of individually identifiable health information controlled? The traditional model for the disclosure of patient information is informed consent. At a 1993 House of Representatives hearing on confidentiality of health records, witnesses representing important segments of the health care industry and consumers identified informed consent as the basic device controlling the disclosure of individually identifiable health information.9 Yet when approached privately, most witnesses acknowledged that informed consent is more of a fiction than a realistic model for control over health records.
For the disclosure of health information, informed consent is rarely either informed or consensual. Most patients have little, if any, ability to refuse to consent to the disclosure of health information to an insurance company paying for their treatment. For most Americans, a third party pays most personal health bills.10 Few have the financial ability to pay a significant hospital or medical bill without insurance. Nothing is terrible or unreasonable about requiring individuals to agree to disclosure when someone else is paying the bill. This does not mean, however, that agreement to disclosure as a condition of payment is voluntary.