In the summer of 1816, while vacationing by the shores of Lake Como with her then-lover, Percy Bysshe Shelley, and Lord Byron, Mary Shelley had a dream.
I saw the hideous phantasm of a man stretched out, and then, on the workings of some powerful engine, show signs of life, and stir with an uneasy half vital motion. Frightful must it be; for supremely frightful would be the effect of any human endeavor to mock the stupendous mechanism of the Creator of the world. His success would terrify the artist; he would rush away from his odious handy-work, horror-stricken. … He sleeps; but he is awakened; he opens his eyes; behold the horrid thing stands at his bedside, opening his curtains, and looking on him with yellow, watery, but speculative eyes.
I opened mine in terror. The idea so possessed my mind, that a thrill of fear ran through me, and I wished to exchange the ghastly image of my fancy for the realities around.
Mary Shelley's monster is nothing like Boris Karloff's portrayal of Dr. Frankenstein's creation, which has haunted so many of our own early dreams. What she has accomplished in her remarkably prescient work is to highlight a theme which increasingly is the stuff of modern nightmares. She depicts a world in which scientific technology has outstripped ethics and humanity, with horrific and tragic consequences. Man, in his scientific hubris, has challenged God by meddling with the very core of life itself.
However, this is not simply a dreary tale of a Luddite preaching against progress. What makes Shelley's work so fascinating is that she presents the essence of the dilemma: on one hand, the disaster of technology run amok; on the other, the inestimable promise to mankind of a science that is humane and thoughtful. The subtitle is “A Modern Prometheus.”
What immediately comes to mind are recent biotechnological breakthroughs, such as cloning and the mapping of the human gene. The ultimate consequences of the Human Genome Project may well change our world far more than did the discovery of nuclear power. Just as that awesome power gave us the capability of destroying ourselves or reaching for the stars, so too does control over our DNA give us infinite capacity for good or evil. We have only just begun to imagine the ethical dilemmas, dangers, and opportunities posed by such knowledge.
Recently the citizens of Iceland voted to allow their government to collect DNA samples from their entire population. There are some 270,000 people in Iceland, nearly all of whom are descended from sixty original families, making this a particularly desirable group for genetic research. The company created to collect this data will retain it in a centralized government databank. The company has granted Hoffman-La Rouche, the giant Swiss pharmaceutical firm, exclusive rights to use these data for research on twelve genetically based diseases. The Icelandic government will retain this genetic information in perpetuity and will continue to collect similar data from succeeding generations. In a rancorous debate, some compared the project to “medical” experiments performed by the Nazis, leading the project manager to suggest that anyone who felt that way had no right to live in Iceland.
Clearly, the potential for knowledge gained from this research is enormous, but the potential for misuse of these data is also virtually unlimited. In the United States, there is a similar and growing movement to collect genetic data on various populations. Already, the military has gained permission to collect such data, presumably to make more ready identification of combat casualties, although the percentage of troops actually exposed to combat at any one time is very small. Strong economic interests are pressuring Congress to include DNA profiles in individualized birth-to-death health records on all citizens, to be retained in a centralized government databank, accessible to researchers and other “stakeholders.”
While the nation was preoccupied with the impeachment hearings, Sen. Arlen Specter (R-Penn.) quietly shepherded a proposal through his extremely brief Congressional hearing, which resulted in the National Institutes of Health being allowed to fund biotechnology companies doing stem cell research. Stem cells are early embryonic cells from which all organs and tissues of the body are derived. The only source of tissue for this research comes from — you guessed it — embryos. However, in a bit of legal legerdemain, the hearing concluded that such tissue is not actually embryonic because the placenta does not arise from it.
The prospect of being able to grow new organs and tissues to repair a broken body is exciting. However, these are experiments on living human flesh which are being approved by Congress in the absence of true public debate. The primary sources for the gathering of stem cells are aborted fetuses or unused frozen embryos from in vitro fertilization attempts. It is anticipated that demand will quickly outstrip supply, and production of new embryos will be necessary, probably obtained by the harvesting of purchased sperm and eggs.
So what has this got to do with the American and psychoanalysis? I believe that, at its core, psychoanalysis is about human freedom and the uniqueness of each individual. The mission of psychoanalysis should be to enhance and preserve the essential “humaneness” of individuals and society. Within the next few years, a course will be set that will determine how our society will grapple with these critical bioethical issues. Psychoanalysts should not only participate in these debates but should also play a leading role.
The explosion of technical knowledge will continue to expand. In the midst of such heady potential for scientific progress, it becomes difficult for a society to maintain its humanity and its soul. It has been said that a society can be judged by how it treats its poor, sick, and young. At the moment, we don't seem to be doing very well by this yardstick. Unchecked, the situation is hardly likely to improve. In our society, scientific research and health-care delivery are frequently driven by the quest for corporate profit. Corporations will speak for themselves in Congress, particularly in the absence of campaign finance reform; who will speak for the people?
Psychoanalysts and the American are uniquely placed by knowledge, inclination, and organizational structure to be an important influence in these decisions. Psychoanalysts are humanists by nature and revolutionaries by training. In our professional organization, we have a continuity and especially a focus that other groups with wide constituencies (such as the two APAs and the AMA) cannot match. Though our numbers may be small, the ability to concentrate our energies and resources give us a strength far beyond our numbers. What we have lacked has been political and tactical knowledge.
The Clinton Health Plan of 1993 gave us our first real taste of serious political combat. Since then, we have learned, and we have achieved a great deal. We were perhaps the first to point out the mortal danger the Clinton Plan posed to independent practice, and we played a significant role in its defeat. We were also among the first to raise the alarm about managed care and its inherent corruption and exploitation of patients.
The American and the Coalition for Patient Rights have taken a leading position in the battle to preserve the right to privacy and the confidentiality of health information. Our ability to influence the privacy debate was greatly strengthened by the Supreme Court's decision in Jaffee v. Redmond, in which, with the Psychoanalytic Consortium, we submitted an amicus brief. Privacy continues to be the current battleground, but we are just warming up.
Over the next four months, Congress may well determine whether citizens will have any control over their health-care information. Under the Administrative Simplification Amendment of the Kennedy-Kassebaum Bill, Congress has until August of 1999 to pass privacy legislation. If Congress does not act, the destructive regulations promulgated by Health and Human Services become effective. Bills by senators Jim Jeffords (R-Vt.), Patrick Leahy (D-Vt.), and Robert Bennett (R-Utah) and representatives Edward Markey (D-Mass.) and Jim McDermott (D-Wash.) will be introduced, along with a number of others. We are working closely with the offices of Jeffords, Leahy, Markey, and McDermott to strengthen the more positive bills and are vigorously opposing the negative ones.
Senator Bennett's bill is an interesting example of legislation that purports to protect privacy while actually destroying it. Before the Senate Committee on Labor and Human Resources, the Coalition for Patient Rights testified against the original version of this bill, the Medical Confidentiality Act of 1995. Media attention to testimony by Denise Nagel played a major role in this bill's demise in committee.
In its new incarnation, this bill no longer even pretends to protect privacy, focusing instead on “confidentiality,” which is now defined as what happens to information once it is received by the insurance company. Patient consent and the right to privacy are simply ignored. These tactics can only succeed if the true nature of such legislation is successfully concealed from the public. Clearly, the media can be a powerful weapon in the public interest, and thanks to Public Information Committee chair Leon Hoffman and others, we are increasingly effective in its use.
Our administrative meetings last March and our spring meeting have both been planned with the twin goals of educating ourselves in the effective use of the political process and taking advantage of this critical timing to influence pending legislation directly. It is extremely important that all of our members make full use of this unique opportunity to participate in political and media training. Hopefully, members attending these meetings will carry this knowledge back to their home societies and institutes and begin to set up or augment political action and public information committees. This will be a critical link in our developing national network to influence public policy at both the state and federal levels.
It was Freud's hope that psychoanalysis could become a major force for the public good. Understanding that the number of patients directly treated by psychoanalysis would always be relatively small, Freud felt that psychoanalysis should make a larger contribution to society in the use of psychoanalytic knowledge in education, science, and public policy. However, we lost our way. A narrow view of transference and other internal factors led psychoanalytic groups to become increasingly isolated over many decades. Freud's larger vision for the social mission of psychoanalysis was lost, or at least temporarily misplaced.
In the last decade we have witnessed events we would never have thought possible: the corporatization, dehumanization, and decline of American health care. We have seen a direct assault on the doctor/therapist-patient relationship. We have seen human suffering reduced to a formula and treatment stripped of compassion, all in the name of profit. Now it seems that the efforts of many groups, including our own, have resulted in such an intensity of public outrage that major managed care reform seems likely.
We have seen that under managed care there is no limit to how low the quality of care will be driven in the interest of maximizing profit. Can anyone imagine that biotechnological advances, wondrous in themselves, are any less likely to be driven by corporate greed? On the contrary, the potential for ethical corruption and exploitation of the public for corporate profit is truly staggering. It will only be held in check by strong and continuing vigilance and pressure from professional groups like the American.
We have awakened from our long slumber. We have begun to engage the serious social issues of our country, such as violence and prejudice. We have gained political expertise and sophistication. We are learning to hone our Association into a lean and effective instrument for public education and political action. We have received our early instruction in the struggles over independent practice, and now privacy.
We have an unprecedented opportunity before us. We can make Freud's dream of psychoanalysis as a force for ethical and social good a reality. By finally fulfilling our responsibility to be a significant voice in the debate on public policy on all health-care issues, we will be demonstrating to society the value of psychoanalytic thought as well as having a direct effect on the public good. We have the means and the knowledge; I believe we have the will. We can do no less.