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Difficult as it may be for us to
acknowledge, a fulminant epidemic is already well upon us.
That which is already upon us, of course, can no longer be prevented
(if it ever could have been). What might still be preventable,
however, is the increasingly dramatic acceleration of the AIDS
pandemic around the globe. This book is about the ethical issues
facing those who are struggling to control, with a vaccine, a
pandemic that gives every impression of being already out of control.
Ancient Greek tradition honored the medical art of healing, under the form of the god Aesklepios, and honored the medical art of prevention, under the form of the goddess Hygeia. No one who has ever been healed from a sickness will want to minimize the importance of the art of healing as performed by a skilled and caring physician. Equally important, however, is the medical art of prevention. The small statue of the goddess Hygeia, which stands just outside the main entrance to the World Health Organization in Geneva, symbolizes that organization's commitment to the prevention of sickness and suffering.
This book too reflects the goddess
more than the god. It is about prevention.
It is about minimizing suffering and maximizing hope and well-being
in a struggling and imperfect world.
It is about protecting the rights and well-being of human beings who themselves are imperfect, who suffer, who are flawed, yet who live hope-filled lives.
This is a book about a complex, difficult, and extremely important question. The question is this: How, when, where, under what conditions, and on whom shall we test experimental AIDS vaccines?
As an academic, I have been blessed with the freedom to reflect on these matters without any built-in bias: I neither work for, nor have a financial interest in, any pharmaceutical company or medical establishment. I am not part of any government or agency that is promoting vaccine trials. I have no financial interest in wanting candidate vaccines to get tested. Nor have I any special interest, financial or otherwise, in wanting candidate vaccines to not get tested. I do, in fact, still have a rather warm hope that some form of a moderately successful AIDS vaccine will eventually be developed.
If it ever turns out to be the case that there are persons with a naturally occurring immunity to HIV infection and AIDS (as, for example, the long-term survivors, or the long-term non-progressors, or the Gambian commercial sex workers in recent news stories, or any of the individuals with apparent immunities to HIV periodically reported in the press), then that will indeed be a significant ray of hope for those searching for a vaccine.
In any case, this book is not an argument for or against the testing of HIV vaccines, except in so far as such vaccines could be part of a successful strategy for slowing or stopping the pandemic.
Nor is this book an argument for one side or the other of most of the ethical questions it raises (although it does take a position on some of the central questions raised in the Introduction).
What this book is trying to be, rather, is an exploration of, and a journey through, some of the central ethical issues that need to be discussed prior to undertaking large scale human efficacy trials, either in the industrialized world or in developing nations.
The purpose of this book, then, to say it in the simplest terms, is to pose the questions, to lay them out in all their stark plainness, and in all their troublesome complexity. It will lie with another, later book to propose answers to some of these dilemmas. This book is primarily an attempt to articulate and clarify the questions, questions which will, I hope, stimulate large scale public discussion. This purpose arises from a deeply held belief that it is only in the clear posing of good questions that any adequate answers will ever be discovered.
AIDS vaccine research is of crucial human importance, whether it ultimately proves to be fruitful or not. It is a drama that fully deserves its hour on center stage. Although one author believes that "the eyes of the world are on HIV vaccine researchers, today more than ever," I believe that the spotlights on HIV vaccine research will not reach their fullest focus for another two or three years. This research is exceptionally important, and very much deserves our attention and our scrutiny. It deserves our very best thinking
This book intends to raise the issues, to explore their various sides, and to encourage public discourse about the crucially important global policy questions entailed by this research.
In the arena of HIV and AIDS there are, of course, a wide variety of very complex, powerful, and controversial ethical issues. In my regular teaching of a Medical Ethics course which is devoted exclusively to ethical and policy issues related to HIV and AIDS, we explore as many of those issues as we can fit into one college term. This book, however, focuses on only a very small subset of those ethical problems, namely, the ethical issues concerned with testing HIV vaccines in persons who are not infected with HIV.
One final prefatory note: the existentialist philosopher Soren Kierkegaard has one of his pseudonymous authors (Johannes Climacus) ironically note that all the famous authors of his day seem to want to "make spiritual existence...easier and easier" for people. Climacus concludes that the only thing left for him to do is to make things harder and harder for people. "I conceived it as my task [he says] to create difficulties everywhere."
Unlike Kierkegaard's ironical pseudonym,
I do not conceive it as my task to create difficulties everywhere.
I do, however, conceive it as one task of this book to recognize,
to acknowledge, and to make known the wide and varied array of
ethical difficulties that do already exist in the prospect of
designing these trials. I hope that creative minds will find ways
to design these trials so that we can deal fairly and justly with
the persons who decide to volunteer for them, and so we can make
the trials successful in answering the scientific questions posed
to them.