The theory was eugenics, and its history is dreadful-and, to those who were caught up in it, so embarrassing-that it is now rarely discussed. But it is a story that should be well known to every citizen, so that its horrors are not repeated.1
The National Institute of Health has announced plans to set up a centralized Genetic Testing Registry, a move which supporters have hailed as an important step forward for medical research. But others are not so sure about its merits and are concerned about its potential for abuse.
In fact, the NIH itself shows an awareness of this potential. In a 2001 article in The NIH Catalyst, currently posted on the NIH's own website, we read:
"According to his definition of eugenics-interference with individuals' procreative choices in order to attain a societal goal-eugenics lingers in our society, perhaps more dangerous because it is not so obvious, cautioned Neal Holtzman, professor of pediatrics at the Johns Hopkins Medical Institutions in Baltimore.
"Eugenics may lurk under the mask of compassion and cost savings. At the dawn of prenatal diagnosis, he said, some scientists maintained that:
"*Carriers of recessive hereditary defects should be warned against or prohibited from having children.
"*Parents have a duty to abort if a severe birth defect is detected.
"*Parents should feel guilty if they continue to reproduce kids with cystic fibrosis.
"Society needs to be alert to the abuse potential of genetic advances, he emphasized-lest such occurrences as these turn out to be modern landmarks along a slippery slope to the past ..."2
What, exactly, does the NIH propose to do?
The NIH answers, to create "a public database that researchers, consumers, health care providers, and others can search for information submitted voluntarily by genetic test providers. The Genetic Testing Registry (GTR) aims to enhance access to information about the availability, validity, and usefulness of genetic tests.
"Currently, more than 1,600 genetic tests are available to patients and consumers. But there is no single public resource that provides detailed information about them. GTR is intended to fill that gap.
"The overarching goal of the GTR is to advance the public health and research into the genetic basis of health and disease. As such, the registry will have several key functions:
"*Encourage providers of genetic tests to enhance transparency by publicly sharing information about the availability and utility of their tests.
"*Provide an information resource for the public, including researchers, health care providers and patients, to locate laboratories that offer particular tests.
"*Facilitate genomic data-sharing for research and new scientific discoveries."3
Should Participation Be Mandatory?
What could be wrong with any of that?
Nothing, says the Genetic Alliance-which describes itself as "the world's leading advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families and communities."4 In fact, the Genetic Alliance likes the idea so much, it recommends that participation in the GTR be made mandatory.5
Genetic Alliance staffer Vaughn Edelson told us that the purpose of the GTR would be "to get all the information in one place." Genetic testing would not be mandatory: just the registry would be mandatory, "for purposes of quality control, comparisons, etc.," she said.
"Thousands of labs offer genetic testing, but there's no one place to serve as a home base, and a data base, for researchers," she said. "It would not be mandatory for individuals to be tested. The labs would just need to register themselves and what kind of tests they offer."
No privacy issues would be involved, she said-"no one's personal information will be in the registry. The GTR just gives anyone access to information about the availability and usefulness of tests."
Ms. Edelson declined to comment on the difference between eugenics and the Genetic Alliance's motto of "transforming health through genetics." We were advised to direct such questions to the Alliance's president, Sharon Terry-who did not answer our emails or return our phone calls.
Who Would Rate the Tests?
No one at the NIH agreed to discuss the matter with us, so we contacted Prof. Neal Holtzman, who was quoted in the NIH Catalyst article cited above.
"I see nothing wrong with maintaining a registry of gene tests," Prof. Holtzman said. "It is, however, worrisome that it is the test provider who is responsible for all the information about its tests in the Registry, and that no clear effort will be made to examine the veracity or adequacy of that information per se." In other words, the testing laboratories themselves would be reporting on how reliable or useful their tests are.
We also asked Prof. Holtzman if he was worried about the creation of a GTR being a first step toward collecting genetic information about citizens. Given the recent enactment of a vast "Health Care Reform" law, and its potential to lead to strict rationing of medical care as a means of controlling costs, we wondered if it might also lead to a rebirth of eugenics-perhaps under another name.
"As reporting of test results is not part of the Registry," he said, "I see little danger of eugenics. The danger, rather, is that providers and the public may be misled by some laboratories' or companies' data in the Registry."
He added, "As long as we have a shred of democracy and civil liberties, I don't see that scenario [eugenics] happening."
Here It Comes...
But others do see it happening.
"All of these things start with, ‘We want to improve health'-but it never stops there," said Dr. David Prentice, with the Christian Medical and Dental Association. "When the government gets involved in the doctor-patient relationship, and with the government takeover of health care, you can start to manage not health care, but people. You wind up with the patient's ‘quality of life' decided by some bureaucrat.
"And then we are looking at eugenics, pure and simple. There's an extremely fine line between screening for diseases to assist someone's health care, and screening for diseases to use this information in a ‘eugenics way.' It's still eugenics-only now we can do it on the molecular level, instead of breeding."
Cold Spring Harbor Laboratory in New York was founded in 1910 as a facility for eugenics research and development. It still exists, but now it warns against eugenics, defined as "the self-direction of human evolution."6
Says the Cold Spring Harbor Archives, on the NIH Catalyst Website: "One hundred years later, on the cusp of a new century, the mapping of the human genome opened another door to gene-based strategies to improve human health. Today, however, many eyes are also open-to the potential for abuse."7
The overt scientific pursuit of eugenics goals, exemplified in the Nazi breeding programs and mass murder of the "unfit," was a casualty of World War II. But the spirit of eugenics is still very much with us.
For instance: the Humanist Manifesto II, drafted in 1973 and since then signed by many thousands of "intellectuals" worldwide, including hundreds of Nobel Prize winners in assorted sciences, states as one of its goals, "Using technology wisely, we can ... alter the course of human evolution."8
In a 1963 article in Nature (perhaps the world's most prestigious science journal)-also posted on the NIH website-Prof. Joshua Lederberg, a geneticist at Stanford University, wrote: "The case for eugenics ... has one most trenchant argument against complacency: man's long pre-cultural evolution has given him a biological legacy which can be only fortuitously adapted to the physical power and technological complexity of the modern world. In a word, man, unless he grows less ‘human,' may destroy himself."
Proposing to replace the old term, "eugenics," with a new term, "euphenics," Lederberg discussed "the emphasis on eugenics as the point of application of molecular biology" and looked forward to "eugenic progress."9
More simply put, Lederberg was advocating the purposeful re-engineering of human nature as a way of saving humanity from itself.
The religious parallel is breath-taking. Eugenics posits a form of Original Sin-human nature as it is-and a salvation and redemption delivered by scientists in laboratories. These elite scientists would truly be playing God by recreating man in the image they deem to be optimal.
Such ideas may have gone underground, but they have not passed away
Do You Trust the NIH?
Dr. Prentice says he doesn't trust the NIH.
"They have a bad record for overseeing experiments in genetic engineering and other areas," he said. "I don't trust NIH's ethics-they push for embryonic stem cell research, which has yielded no medical benefits so far, and ignore adult stem cell research, which has yielded real benefits. They point to problems, such as eugenics, and then go merrily forward.
"'Trust us-we're the smart people.' That's what they all say," he continued. "Meanwhile, there is no quality control for many of those genetic tests. No test is 100% accurate, but some of those are as low as 50%.
"How well do these tests correlate to reality? Nobody knows! Genetic testing is just one step past astrology."
Why does he say that? "Because ‘Genetics is everything, it's totally deterministic'-that's their premise. ‘We've found this gene that correlates with ... pick a topic! They ignore free will, choices, experience, nurture, etc. Here's a gene for gambling, here's one for obesity. Here's a gene for being a political conservative, and another gene for being liberal. It's nonsense."
The Rebirth of Eugenics
The NIH Catalyst describes scientists at Cold Spring Harbor Laboratory as "among the vigilant."10 But during the nineteenth and twentieth centuries, says the article, "Not only did some scientists promote eugenics-the science of being well-born-those who did not did little to oppose it."11
Eugenics boosters included Presidents Theodore Roosevelt and Woodrow Wilson and Supreme Court Justices Oliver Wendell Holmes and Louis Brandeis; Winston Churchill; Luther Burbank, Alexander Graham Bell, George Bernard Shaw and H. G. Wells; and Planned Parenthood founder Margaret Sanger, among other luminaries.12 In the spirit of its founder's devotion to eugenics, Planned Parenthood is still aborting a disproportionate number of African-American babies.
No one in any American government would ever say, "Let's compile genetic information on our citizens, so we can weed out those who aren't fit to live." But the new health care law, Dr. Prentice said, "includes comparative effectiveness research-and then we are into the rationing of health care."
Why would a government wish to have such information?
"Some genetic diseases don't kick in until after you reach a certain age-fifty, say," Dr. Prentice said. "Suppose a test shows you have a genetic predisposition for such a disease. What do you think you're going to hear from the government after you have your fiftieth birthday? ‘We can't afford to treat you, after your genetic disease takes over. That kind of treatment is just too expensive.'"
It's easy to imagine what would happen, in such cases. Maybe the patient's care would simply be cut off, and he would be told to take a pain pill. Maybe some form of euthanasia might be suggested. Meanwhile, the test on which such a suggestion would be based might be only 50% accurate!
From establishing a central Genetic Testing Registry, to collecting the names of individuals who receive the tests, and then to collecting the results of the tests and using them to decide who gets care and who does not, is a series of steps not hard to visualize.
Currently patients' privacy, as Prof. Holtzman pointed out, is protected by law, the Health Insurance Portability and Accountability Act (HIPAA).13 But laws can be repealed, amended, or ignored.
Let's return to Dr. Joshua Lederberg, who in 1963 wanted to use eugenics to re-design the human species. Here he is quoted by R. J. Rushdoony: "We cannot insist on absolute rights to life of a piece of tissue just because it bears a resemblance to humanity." Dr. Lederberg was not talking about a mandrake root, but unborn babies. He did not specify how big a piece of tissue was involved. But surely an adult-perhaps someone suffering from a genetic disease, or from dementia-could also be described as a piece of tissue bearing a resemblance to a human being. Dr. Lederberg himself could be so described. Rushdoony remarked, "Take your choice, on abortion and all things else: the paradigm, pattern, law, or absolute of God, or that of Dr. Joshua Lederberg and his kind. You will live or die in terms of your decision ... We are very openly being given our choice of gods, the God of Scripture, or the new gods of science."14
Are we wrong to be afraid that a reasonable, harmless step such as creating a Genetic Testing Registry might somehow lead us down the road to rationed care, death panels, and a rebirth of eugenics?
If the history of the twentieth century teaches us nothing else, at least it clearly teaches this: When the elites of politics and science work together, be afraid. Be very afraid.
1. Michael Crichton, State of Fear (New York: HarperCollins, 2004), 576.
5. From a Genetic Alliance press release dated March 18, 2010, "Genetic Alliance Celebrates Announcement of Genetic Tests Registry," http://www.geneticalliance.org/pr.registry
12. Crichton, 575.
13. For HIPAA privacy rules, see http://en.wikipedia.org/wiki/Health_Insurance_Portability_and_Accountability_Act
14. R. J. Rushdoony, The Mythology of Science (Vallecito, CA: Ross House Books,  2001), 120.