consent and bodily integrity and truth-telling

Truth-telling, i.e., revealing the seriousness of the patient's medical condition to him/her, was not the highest priority in the medical profession until well into the twentieth century. As Fletcher shows (Morals and Medicine (1954), ch. 2), the 1940 Code of Ethics of the American Medical Association provided, in ch. 2,

"A physician should give timely notice of dangerous manifestations of the disease to the friends of the patient."

To the friends of the patient? What was the assumption behind this value? No doubt it was the profession's way of trying to be true both to the understanding of the physician as healer as well as the physician as "gentleman." In the latter capacity he would not do anything to cause unnecessary discomfort in the patient. Indeed, the fear was that if a patient who was terminally ill knew that fact he would probably not be able to endure the horrible truth of that revelation.

Thus, when Fletcher was writing in the early 1950s, as America's first medical ethicist, he dealt directly with the question of truth-telling and medical diagnosis. His major point is that the obligation of truth-telling rests on what he calls the theory of personalism. The philosophy of personalism came to this coutnry in the late 19th century and was identified with Borden Parker Bowne (1847-1910) at Boston University and, in Fletcher's time, Edgar Sheffield Brightman (1884-1954). The theory of personalism places the human subject and human interactions at the center of professional practice. Thus, with respect to medicine, a doctor has a patient and not a case. Fletcher's perspective was that if you take seriously the notion that the doctor has a human subject with whom he is dealing, you will support the notion of full disclosure of medical information to that individual. In Fletcher's understanding, it was the duty of the physician to tell the truth as he sees it to the best of his knowledge.*

[*He tells the story of a Quaker woman who was treated by her physician with prevarications and evasions about the seriousness of her medical condition. The next time she saw the physician, she said, "Thee knowest I do not like to have my feelings poulticed," Fletcher, op. cit., 54)]

From Fletcher and Schloendorff to Today

Major societal changes relating to the disclosure of vital medical information to people occurred in the 1960s and 1970s. A social history of those changes would be fascinating to limn, but all I can do here is to show both sides of the chasm. We see the old system: the desire to "protect the feelings" of patients and the importance of the physician as "gentleman"; we see the appeal for a new system (Fletcher); we live now with the results of disclosure.**

[**Even Fletcher, however, was not quite willing to apply these same standards of physician truth-telling to psychologists/psychiatrists. The feeling was even stronger at that time that the patient had to be protected from information about his/her mental state in order for the professionals better to heal the person. For example, see Fletcher's discussion on pp. 62-63. When did that idea go out the window?]

What interests me in the remaining few minutes I have, however, is to combine the notions of bodily integrity from the 1914 Schloendorff case along with ideas of truth-telling from Fletcher's book, in order to articulate a philosophy or theory of disclosure of vital information about us today. My point is that just as bodily integrity is a central value for us (i.e., you don't go probing around in me without my consent), so our "information integrity" ought to be as sacred. All kinds of information about us is "out there," from our credit scores to our social security numbers to our buying habits. Nefarious or suspicious governments and others may want to try to gain access to this and other information for its own purposes.

There needs to be a shared understanding in our culture, which understanding will result in legislation, that our personal "information" is as sacred as our bodily integrity. The implication of this is that our personal information is only to be shared with us (i.e., the important stuff belongs to us, as Fletcher would argue about our medical information), and that we should be informed by those who have special and important information about us what that information is. We should not be required to pay for it; we should be able to understand and gain access to what information is basically "out there" about us. The issue may be framed by the legal concept of "protection of privacy" or recognition of a "right of privacy" in the US Constitution, but I think it goes far beyond that. It has to do with beginning to see information as a part of our personal property, just as much as our real estate holdings are. Or, to change the analogy, to see a breach in our personal information as tantamount to an unauthorized breach of our bodily integrity by someone.

Conclusion

Our government may say that it wants and needs information about its citizens so that it can "protect" us. But we also know that Americans have the assumption and expectation that their private information will stay private and won't be used against them. These two interests have not meshed well to date. Let that be a task for the near future.

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