Culling the Children

News from the United Kingdom tells us about a woman (and her partner) who desired a child although the prospective mother has a genetic disease, hereditary retinoblastoma. Embryos were created by in vitro fertilization (IVF), tested for the gene that causes hereditary retinoblastoma, and only those which were without the trait were implanted. I haven't read the numbers of embryos involved, but the chances are that half of the woman's oocytes contained the gene. (Of course, that's a statistic. The target gene might or might not have been in all or none of the oocytes that were fertilized.) In her The London Times Online reporter comments on the religion of the blind man who draws comparisons between PGD and amniocentesis and abortion which is already common in families with genetic diseases.

Hereditary Retinoblastoma is a horrible disease that causes malignant cancers in the eye and usually manifests by 5 years old in the children who carry the disease. They may loose one or both eyes to the cancer and treatment, and then develop tumors of the bone or soft tissues by the time they are 50 years old. People who have the gene defect associated with Retinoblastoma have an 80%-90% chance of developing the cancers. (If they make it to birth - embryo de-selection and abortion are 100% fatal.)

Since the UK's authority on the use and utility of embryos, the Human Fertilization and Embryology Authority (HFEA), first began authorizing pre-implantation genetic diagnosing (PGD) of embryos for disease it seems we have daily updates on Britain's discovery of new ways to create and kill the tiniest of our children. PGD is the technique of removing one cell from a very early embryo - at about the 4 to 10 cell or "morulla stage" - for genetic testing.

Unfortunately, there isn't any regulation of artificial reproduction and genetic testing in the United States. We don't know how many of the babies who are now in the arms of their mothers and fathers because of the intentional use of in vitro fertilization had several siblings who were discarded in the lab because of their genetic disabilities which were diagnosed by PGD. And which don't know how many and which diseases are under scrutiny. This article, from pregnancy-info.com
a site that specializes in information on infertility, speaks about PGD for sex selection in the case of sex-related genetic disease and even for "family balancing." More and more genetic tests are being developed. Among the possibilites: a test for the gene(s) that increase the chance of developing breast cancer, which is a multifactoral disease - meaning that environment and other genetic influences are at least as important as the gene being tested for.


30 years ago, the public, scientists and ethics community were still reeling from the abortion debate (more in the US than in the UK, where abortion has been legal since 1967). (Click here for a history of the abortion laws in the UK, written for "young people"!!!) When IVF was introduced as the treatment for millions of infertile couples, we were assured by the ethicists and OB/Gyns that our concerns about eugenics by picking those children who would survive and which would not because of disease or the possibilities of disease was pure science fiction. How could we be so heartless and cruel to deny these women their "right" to have children of their own. Then came the awareness that "spare embryos" were being frozen indefinitely, that we needed to somehow regulate surrogacy, and that we could now "cure" genetic diseases like Tay Sachs and being female before implantation.

Those of us who engage in debate with "pro-choicers" or cloning advocates or plain ol' utilitarians are familiar with the accusation that we are hypocrits because we don't picket IVF clinics. Either we don't care enough about embyros to overcome our compassion for the infertile or we're dishonest when we object that babies with Down's syndrome are aborted.

The few who are consistent are treated as worse than hypocrits: they are heartless ideologues who would "force" women to carry "defective" babies to term or remain childless. The same people who decry the money we "waste" at the end of life on futile care are appalled that we would waste our Medicaid funds by allowing these babies to be born in the first place.

With IVF, we were expected to ignore the eugenics that eliminated random children because they weren't wanted or because they were "spare" embryos. Now, with IVF, PGD and developing genetic manipulation in vitro, we'll be expected to show compassion for the mothers and fathers, show practical utilitarian ethics to protect the "scarce resources" of tax-funded health care and ignore the more specific practice of creating, testing and culling what the HFEA's own publication calls "Tomorrow's Children."

The focus is wrong, because the basic ethics are wrong. "Tomorrow's Children" discusses the policy of evaluating the welfare of the child before IVF, and concludes that,

"There should be a presumption to provide treatment to all those who request it, unless there is evidence that the child to be born would face a risk of serious medical, physical or psychological harm."

And so, in order to fit the history of evolving utilitarian ethics to reduce barriers to abortion and creating enough in vitro embryos to have "spares," the drive to seek better (post natal) testing and screening and cures for disease, or, at the very least, investigating ways to test gametes for the disease before fertilization - the beginning of the new, organized organism that is the embryonic human child of his parents - is blunted. IVF, PGD, and prenatal in vivo testing despite ethical qualms about the "option" of "therapeutic abortion" are tolerated and tolerance has become societal pressure on parents.

The UK press' fascination with the new HFEA policy should remind us in the States that we've had unregulated IVF, amniocentesis, and genetic diagnosis. We've used it for the selection of "designer babies" who can donate stem cells to a sibling or who can be "guaranteed" to be healthy.

That there's a reason that the incidence of Down's syndrome is going down.

That there's less research on cures than on detection and distruction.

That there's a higher standard for "every child should be wanted."