Commentary on Hans-Martin Sass

- Frank (Yeruham) Leavitt, Ph.D.
Chairman, The Centre for International Bioethics
Faculty of Health Sciences
Ben Gurion University of the Negev, Beer Sheva, Israel
Eubios Journal of Asian and International Bioethics 11 (2001), 132.

Hans-Martin's paper is excellent and informative in itself, but I have some questions about its relevance to the really serious matters. I have always been amazed at the fact that bioethicists make such a big issue about privacy while nobody seems to care very much about the much more important issue of interventional research which is carried out on non-consenting subjects.

Before addressing the issue of privacy, I want to illustrate what I mean by interventional research on non-consenting patients. A few years ago the BMJ published a study in which thirty-four, 3-month old infants were exposed to 15% oxygen, in order to check a hypothesis that there might be a connexion between the low oxygen environment in aircraft and Sudden Infant Death Syndrome. (Parkins KJ et al. BMJ 1998; 316: 887-894.) Obviously the subjects themselves could not consent. And I do not understand what gives parents the right to give permission for a medical intervention on their baby when there is no clear and serious health benefit to this specific baby. The latest (October, 2000) version of the World Medical Association Declaration of Helsinki sidesteps the issue by allowing consent to be given to the: "legally authorized representative in accordance with applicable law" when "the research is necessary to promote the health of the population represented" (while the phrase "population represented" is left undefined.) This is a serious matter because any medical intervention, no matter how minor, is potentially dangerous to the patient. Yet while interventional research continues unimpeded on babies, mental patients and mentally compromised geriatric patients -- and so often with no clear medical benefit to the subjects experimented upon -- bioethicists are putting major efforts into the relatively unimportant matter of privacy.

Not only is privacy less important than health, it is probably a dead issue anyway because electronic communication is putting it out of date. This is because so many of our secrets are now on computers -- whether it be in the form of computerized medical records, email, employment histories, the history of websites we have accessed, or whatever -- and nothing seems immune to the hackers. If they can get into the computers of defense ministries, they should have no problem with hospitals.

But what would be wrong with a world in which privacy no longer existed? Some people would have a harder time getting health insurance, but in normal countries health insurance is government supported and universal anyway. Drug companies would make money out of our genetic data without sharing the profit with us; but is money all that important, when we think of how much humanity will benefit when epidemiological and environmental data are correlated with genomes? Our spouses will find out about our girlfriends or boyfriends, but mightn't that teach us to be more honest with our spouses? Some of us will have a harder time getting certain kinds of jobs; but maybe it will be best for us to face up to facts about what employment we are suited for and what not. There used to be a saying: let it all hang out. If that were our motto, maybe the world would be a better place. When privacy is the norm, it is embarrassing to have one's secrets revealed. But when everyone else is exposed too, one can accept one's own exposure more calmly. I think the death of privacy is near, and I am ready to say good riddance. This might be the dawn of a new era of openness, honesty and mutual understanding.

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