"Designer babies" will be all the rage this Spring. So, apparently, will be historical amnesia. Historical amnesia is a tragic genetic illness. Sadly, it is affecting increasing numbers of people in our culture. As Santayana has famously said, "those who forget the past are destined to repeat it."
Several "designer baby" stories during the last two weeks reinforce Santayana's warning. On 16 February, Britain's first designer baby was born. The British couple hoped to have a child who could supply bone marrow stem cells for the child's ailing sibling. The couple was referred to the Reproductive Genetics Institute in Chicago where they conceived through in vitro fertilization. On 22 February, another British couple was given permission by the Human Fertilisation and Embryo Authority to use IVF to create a child who would be a perfect genetic match for his brother who suffers from a rare blood disorder. On 27 February, we were told that one of Scotland's largest hospitals, the Glasgow Royal Infirmary, had applied for a license to create designer babies for couples with genetic disorders like thalassemia and Fanconi's anemia.
That Britain and the United States are swapping these developments is poetic in a rather dark way. After all, it was the Victorian Francis Galton of England who pioneered the old eugenics. "Eugenics" means "good genes" and stands for a movement to make better humans through good breeding. In the States the eugenics movement was launched by Charles Davenport who saw the importance of Mendel's experiments with the genetics of pea plants for human genetic control. In 1904, Davenport set up the Cold Spring Harbor Labs on Long Island, which for many years was under the leadership of James Watson, the co-discoverer of the double-helical nature of the DNA molecule.
By the 1930s, through the American Eugenics Society, the idea of eugenics had a stranglehold on the American psyche. So-called "Fitter Families" contests were held across the United States in the 1930s. Fitter families were families with fewer incidences of physical and mental disability. Their ethnic heritage also had to remain intact. Racial intermarriage disqualified families. Thus, the fitter families were exclusively Caucasian. Mary T. Watts, co-founder of the first contest at the 1920 Kansas Free Fair, said: "While the stock judges are testing the Holsteins, Jerseys, and whitefaces in the stock pavilion, we are judging the Joneses, Smiths, and Johns." Winners were given a medal inscribed with the slogan, "Yea, I Have a Goodly Heritage."
Whole clans of people were labeled genetically inferior, one group being characterized as "under developed humanity." In his splendid chronicle of the eugenics movement, In the Name of Eugenics: Genetics and the Uses of Human Heredity, historian Daniel J. Kelves observes that the gospel of eugenics was preached evangelistically throughout American society under the aegis of the American Eugenics Society.
In order to prevent "undesirables" from reproducing, mandatory sterilization laws were enacted in the U.S. The "feebleminded," "indolent," and "licentious" were sterilized either without their consent or against their wills. So-called "eugenical sterilizations" increased from around 3,000 in 1907 to over 22,000 in 1935. Most states had mandatory sterilization laws. In one well-known case, a young mentally retarded girl named Carrie Buck was given the "choice" either to be sterilized or to be returned to her asylum. Because both her mother and grandmother had been mentally retarded, the famous jurist Oliver Wendell Holmes declared of Carrie Buck, "three generations of imbeciles is enough" and mandated that she be sterilized. For information and hundreds of pictures from the American eugenics movement see www.eugenicsarchive.org/eugenics.
Combined with new and powerful technologies, the old eugenics movement has led to a new eugenics movement. So-called "designer babies" are only one example of the new eugenics. Preimplantation genetic selection is another. Others are surely to come, unless we remember our history.
The desire to save one's children from suffering is a laudable emotion. Who wants to see their children suffer? But to conceive a "designer baby" as a therapeutic tool crosses a line from which there is no return. To do so is to treat one person as a means to someone else's physical well being. Not only so, but selection of one's offspring on the basis of genetic suitability means that some children are not permitted to be born. They are destroyed in the fertility clinic or used for embryo research.
Finally, where does it all stop? What other conditions will we select for? Will our offspring become living drug stores to serve our health needs? And what will we select out? Will we stop at sex selection? Who decides what is a disease gene versus a merely undesirable genetic trait?
Most people in the disability community already know that "disease" and "illness" are not value-free labels. Disabilities (like abilities) are largely social constructs rather than clear-cut categories. Unfortunately, many able persons and many in the scientific community seem unaware that this is the case.
If we would see a truly human future for ourselves and for our children we must value individuals for who they are, not for what they can do. The praiseworthy goal of treating human disease and relieving human suffering must not be allowed to become a tool for eliminating the persons who are suffering. To do so would be to use the good gift of genetic knowledge for evil ends. We must not let children be designed for our own purposes or the purposes of our other children. Only vigilance on the part of all of us can prevent a bleak eugenic future. The social, ethical, and legal implications of the new eugenics is not an arena for only the scientist, philosopher, theologian, or lawyer. We all have a stake in our genetic future.