The Other Side of the Human Genome

Henri R. Manasse, Jr.

Disclosures

Am J Health Syst Pharm. 2005;62(10):1080-1086. 

In This Article

End of Eugenics in America

As American awareness and furor over the Nazi atrocities grew over the late 1930s and into the war years, American eugenics finally began to wear out its welcome. The Carnegie Foundation discontinued funding for the ERO in 1939, which closed immediately. Although pockets of pro-Nazism and hard-line eugenics advocacy persisted in the United States, the end of eugenics as a credible concept was hastened by new discoveries in legitimate genetics, belated recognition of the scientific corruptness of eugenics rhetoric, and collective revulsion at the horrors of the Nazis' eugenics policy. However, the damage continued to be done -- if quietly -- as state eugenics policies remained on the books, and selective sterilizations and marriage revocations continued well into the 1970s.[30] In recent years, a number of state governments have issued apologies for these actions and have begun to address and repeal the policies that have caused such harm and denied rights -- indeed, the right even to be born -- to so many.

Fortunately, human genetic research managed to extricate itself from the dying and discredited eugenics movement. Legitimate applications of Mendel's laws to human biology and medicine flourished after the historic discovery of the double helix in 1953. In 1966, researchers cracked the four-letter "code" that cells use to express genes and manufacture proteins. The first genetic engineering company, Genentech, was formed in 1976 and by 1982 had introduced genetically engineered insulin for human use. Subsequent discoveries in chromosome and gene mapping and mass duplication of genetic material in the laboratory precipitated the initiation of the Human Genome Project in 1990, with its firm financial and intellectual commitment to ELSI programs.

Both NHGRI and DOE committed 3-5% of their genome research budgets to separate but coordinated ELSI initiatives. The five goals of the current ELSI research agenda are:

  1. Examine issues surrounding the completion of the human DNA sequence and the study of human genetic variation,

  2. Examine issues raised by the integration of genetic technologies and information into health care and public health activities,

  3. Examine issues raised by the integration of knowledge about genomics and gene environment interactions in nonclinical settings,

  4. Explore how new genetic knowledge may interact with a variety of philosophical, theological, and ethical perspectives, and

  5. Explore how racial, ethnic, and socioeconomic factors affect the use, understanding, and interpretation of genetic information, the use of genetic services, and the development of policy.[31]

NHGRI and DOE have provided tens of millions of dollars in grants and sponsored hundreds of research projects that have resulted in public and professional educational materials (in print, interactive electronic formats, and mass-media broadcast programs), scholarly papers, reviews of ethical issues for health professionals and organizations, publicly accessible databases, training workshops for judges, clergy conferences, educational tool kits for schoolteachers, books and book chapters, public policy advocacy and educational activities (including congressional fellowships and model legislation), and online archives on the history and lessons of the eugenics movement.[32,33]

The lessons of history are not easily learned -- rather, they are often ignored and consequently readily repeated. Unfortunately, this has been seen with the recent account of medical abuse and torture of Abu Ghraib prisoners in Iraq by U.S. military officials and the collaborating efforts of medical personnel. Cited incidents of prisoners being beaten, burned, sexually humiliated, and asphyxiated, while many medical professionals monitored the interrogations, denied health care, and falsified medical records and death certificates,[34] tell the tale that the abuse and misuse of medical authority deplorably continue. And while this abuse is quite distinct from the eugenics practices conducted at Auschwitz, the moral and ethical obligation of health care professionals to care for and protect the rights of each detainee has been similarly diminished.

Moreover, the eugenics era in America is a blot on our history that seems to have been painted in disappearing ink, omitted from the typical school's history curriculum and not stamped in the consciousness of our emerging scientists, legislators, and health professionals. Though we may never agree on the religious or existential notions that shape our respective worldviews, we must come to and act on the agreement that the individual person possesses a sanctity that we cannot willfully violate. German scientist Benno Muller-Hill wrote, "Today human genetics is, once again, at the focal point of our interest, so it is imperative that the most unpleasant history be remembered if we are to prevent it being reincarnated in a modernized form."[35]

Why is it important for us as pharmacists to know and contemplate these issues? As scientists, we belong to the privileged community that possesses the intellectual and technical capacities to study, and in many ways to affect, the world around us. More recently we have delved more deeply into studying and altering the biological and molecular worlds within us. However, when that learning and action are unguided by a moral map and an explicit ethical framework, then surely we begin to chart a course, as did the "race hygienists," along the road to perdition. Imagine the damage that could be wrought if today's genetic research were as morally unencumbered as that conducted by the Nazis. To the unholy litany of incarceration, sterilization, and genocide could be added the genetic production of humans (or even part-human organisms possessing human sentience mixed with traits of other species) brought into the world for the express purpose of experimentation. If, in our efforts to advance knowledge, we fail to recognize the human person as the basic unit of sentient, viable life and permit the exploitation of individual persons for the perceived sake of the state, then ideology will eventually replace justice as the arbiter of who may live freely and who will be confined, who may procreate and who must not.

As practitioners, all of us will encounter the clinical, scientific, and ethical questions associated with genetic research. Many times, we are the most accessible health professionals to ambulatory patients. As such, we can anticipate being asked an ever-growing array of questions about genetic medicine, thereby helping patients distinguish fact from myth about pharmacogenomic "personalized medicine," educating them about the legitimacy (or otherwise) of over-the-counter genetic-testing products, referring them to certified genetic counselors to assist with the difficult decisions of whether to undergo genetic screening or have a family member do so, and perhaps someday preparing gene therapy for delivering modified genes to chromosome targets. Eventually, we will all be patients and will have to make informed and far-reaching decisions about these matters for ourselves.

Pharmacists today are striving for greater stature, responsibility, and accountability in many different public, professional, and political spheres. Thus, we are obliged to become, and remain, literate in the foundational knowledge and evolving practice issues of genetic science. Most importantly, we must avoid the paralysis that comes from wondering what one person can do. Our understanding of the depth of the Nazis' atrocities owes much to German preacher Dietrich Bonhoeffer, who stridently decried the complicity of the German Evangelical Church with the Aryan vision of the Nazis. Bonhoeffer traveled to neighboring European countries, England, and the United States to advocate for greater international resistance to Hitler's aggression. He eventually joined the covert resistance movement that had formed within the German Abwehr (military intelligence), risking and ultimately sacrificing his life rather than remaining what he most deplored -- a "silent witness to evil deeds."[36] As stewards of the medicines we manage and as champions of our patients' health and well-being, we should radiate this spirit of conviction throughout our spheres of influence. As clinicians and scientists, we must work to ensure that never, on our watch, will one person be harmed by the vagaries of science without conscience.

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