From the Chronicle of Higher Education (subscription required), an article by Lila Guterman about prenatal screening for thalassemia on the island of Cyprus.

Cyprus has a high rate of thalassemia, an inherited blood disease, and people there are required to get tested before marriage to find out whether they carry the gene. Prenatal genetic screening is voluntary, but the state pays for abortions when thalassemia is diagnosed.

Even though the Greek Orthodox Church in Cyprus views abortion as a sin, it seems most people are taking that path. Without the screening program, approximately 70 babies would be born with thalassemia each year — one in every 158 births on the island. But no more than one or two such babies have been born in any year since the mid-1980s.

Ruth Schwartz Cowan, a professor of the history and sociology of science at the University of Pennsylvania, has worked to document how and why Cypriots came to adopt and support the screening program. (Earlier post here.) After dozens of interviews on both sides of the island, she came to realize that people in every sector of society had strong reasons to consider the program ethical.

Some Western Europeans and Americans, however, have voiced doubts. They wonder whether reducing the number of people born with the disease will undermine medical care for existing patients. Others worry that the program sits on a slippery slope leading to screening programs for less-deadly diseases.

But the success on Cyprus proves those concerns are hollow, contends Ms. Cowan.

Columnist Michael Gerson, writing in the Washington Post, argues that liberals who pledge an unswerving support for ’scientific integrity’ are eroding the core American principle that all men are created equal. Gerson joins Yuval Levin, writing in the New Atlantis, pointing to the eugenic practices of the late 19th and early 20th centuries as evidence of the moral pitfalls of purely scientific reasoning.

Nazism largely discredited the old eugenics. But a new eugenics — the eugenics of genetic screening and abortion, the eugenics of genetic selection in the process of in vitro fertilization — is alive and well.

Its advocates contend that the new eugenics is superior because it is voluntary instead of compulsory, and unrelated to race. But Levin responds: “Surely the most essential problem with the eugenics movement was not coercion or collectivism. . . . The deepest and most significant contention of the progressive eugenicists — the one that made all the others possible — was that science had shown the principle of human equality to be unfounded, a view that then allowed them to use the authority of science to undermine our egalitarianism and our regard for the weakest members of our society.”

From the Roswell [Georgia] Beacon:

David Tolleson, elected city councilman in Roswell, Georgia, and executive director of the National Down Syndrome Congress, is at the center of a national debate about prenatal diagnosis, eugenics and the rights of people with disabilities.

Tolleson says lessons can be drawn from eugenics-based policies of the past, as health care providers attempt to manage the cost of providing care.

Tolleson’s nemesis is the American College of Obstetricians and Gynecologists, whom he blames for skewing couples’ decisions in favor of abortion and failing to see the richness in disabled kids’ lives. He also believes physicians are afraid of being sued for “wrongful birth” if they don’t stress the negatives. For their part, practitioners of reproductive medicine say they’re obliged to present patients with hard information about the condition and recommend the latest screening technologies, which don’t carry the same risk of miscarriage as amniocentesis. The procedures are recommended as a matter of policy, regardless of a mother’s age. (more…)

Ronald M. Green, writing in the Washington Post, foresees a future in which assisted reproductive technology routinely allows people to prevent the occurrence of genetic disease and disability in their children. He predicts that people will be able to use genetic technologies to avoid having children who might have cancer, obesity or dyslexia, among other things, and rejects criticism that these developments could lead to a society in which eugenics replaces human love and compassion.

Genomic science is racing toward a future in which foreseeable improvements include reduced susceptibility to a host of diseases, increased life span, better cognitive functioning and maybe even cosmetic enhancements such as whiter, straighter teeth. Yes, genetic orthodontics may be in our future. The challenge is to see that we don’t also unleash the demons of discrimination and oppression. Although I acknowledge the risks, I believe that we can and will incorporate gene technology into the ongoing human adventure.

Ronald M. Green is a professor of ethics at Dartmouth College. His most recent book is “Babies by Design: The Ethics of Genetic Choice.”

Brownback and Kennedy do the right thing

By Wesley J. Smith in the Weekly Standard:

It is a bitter irony that even as we are enlarging our commitment to human equality in many areas, we are turning our backs on it in others. In particular, we may be about to eliminate from our society people with Down syndrome (DS) and other genetically caused disabilities.

With the development of prenatal genetic diagnosis, the drive toward eugenics has returned with a vengeance. Americans may heartily cheer participants in the Special Olympics, but we abort some 90 percent of all gestating infants diagnosed with genetic disabilities such as DS, dwarfism, and spina bifida.

… What Kennedy and Brownback hope to provide to parents of genetically disabled babies is the legal assurance that they will be provided information that is complete and informed — rather than counseling tainted by prejudice, ignorance, or fear. The Prenatally and Postnatally Diagnosed Condition Awareness Act may have a clunky name, but it is a noble and practical bill that deserves the support not only of those ideological opposites Kennedy and Brownback — but also of everybody in between.

An upcoming book by Ruth Schwartz Cowan, professor of history and sociology of science at the University of Pennsylvania. On Harvard University Press.

From the publisher’s website:

The secrets locked in our genes are being revealed, and we find ourselves both enthused and frightened about what that portends. We look forward to curing disease and alleviating suffering—for our children as well as for ourselves—but we also worry about delving too deeply into the double helix. Abuses perpetrated by eugenicists—from involuntary sterilization to murder—continue to taint our feelings about genetic screening.

Yet, as Ruth Schwartz Cowan reveals, modern genetic screening has been practiced since 1960, benefiting millions of women and children all over the world. She persuasively argues that new forms of screening—prenatal, newborn, and carrier testing—are both morally right and politically acceptable. Medical genetics, built on the desire of parents and physicians to reduce suffering and increase personal freedom, not on the desire to “improve the human race,” is in fact an entirely different enterprise from eugenics.

(more…)

From the [UK] Daily Mail:

British opposition leader David Cameron has risked angering hardline anti-abortion campaigners by saying he will vote to continue to allow abortions at virtually full term when a minor disability is diagnosed in utero. Cameron has a son with a disability.

… Members of Parliament are expected to vote on a proposal to change the rule that allows abortions as late as 39 weeks if the unborn child is diagnosed with a disability. But Mr Cameron said: “I won’t be supporting that. The current law should remain.”

… The issues raised by the legislation are sensitive ones for Mr Cameron because his five-year-old son Ivan was born with a severe form of cerebral palsy and epilepsy and needs 24-hour care.

A full-term pregnancy is approximately 40 weeks.

The story drew many comments, including this one:

Both Cameron and Brown have children with disability and yet both support abortion up to birth for disability. Is this their real position or are they simply trying to curry voters’ favor because they believe that most people in this country see disabled people as an encumbrance?
(more…)