A human being was spared the horror of losing her mind by age 40 by means of genetic testing, revealed the Journal of the American Medical Association (JAMA) last week. Of course, this medical miracle was an immediate occasion for anxious hand wringing on the part of bioethical busybodies worried about "designer babies."
Specifically, a married 30-year-old geneticist who will almost certainly lose her mind to early-onset Alzheimer's disease by age 40 chose to have her embryos tested in vitro for the disease gene. She then implanted only embryos without the gene into her womb. The result was the birth of a healthy baby girl about a year ago -- one who will not suffer Alzheimer's in her 40s. The mother in this case certainly knows what would face any child of hers born with the disease gene. Her father, a sister, and a brother have all already succumbed to early Alzheimer's.
To achieve this miracle, the mother used the services of the Reproductive Genetics Institute (RGI) in Chicago, a private fertility clinic that has pioneered this kind of testing, called pre-implantation genetic diagnosis (PGD). PGD is being used by more and more parents who want to avoid passing on devastating genetic diseases to their progeny. Diseases tested for include cystic fibrosis, Tay-Sachs, various familial cancers, early-onset Alzheimer's, sickle-cell disease, hemophilia, neurofibromatosis, muscular dystrophy, and Fanconi's anemia. The use of PGD at the RGI has resulted in the birth of more than 200 healthy children so far.
Physicians can test for the presence of disease genes in either human eggs or early-stage embryos. These tests are not cheap. The PGD at the clinic in Chicago costs $2,500, plus $7,500 for the in vitro fertilization procedure. Still these prices are cheap when compared to the pain and suffering avoided. As the tests become more common, their prices are likely to drop substantially.
Of course, no medical advance today can escape censure from a growing claque of bioethical hecklers. In this case, JAMA published an editorial by a bioethicist and a physician who question whether the mother should bring a child into the world that she knows she cannot care for in a few years when she succumbs to Alzheimer's.
This is indeed a good question, but who is in a better position to decide it than the child's parents? Do these bioethical busybodies really think that this mother didn't agonize over this decision? After all, she is a genetic counselor, better informed than many parents of the risks and benefits of genetic testing and in vitro fertilization. Furthermore, she knows all about what it's like growing up with a single parent since she lost her own father at an early age to the disease. And finally, her husband wanted this baby and is willing to raise her by himself.
Her physician, Yury Verlinsky, director of RGI, got it exactly right when he told the Washington Post, "It should be up to the patient."
The prospect of using PGD for any diagnosable disease is particularly upsetting some critics. "Today it's early-onset Alzheimer's. Tomorrow it could easily be intelligence, or a good piano player or many other things we might be able to identify the genetic factors for," said Jeffrey Kahn, director of the University of Minnesota's Center for Bioethics, to the Associated Press. "The question is, whether we ought to." In the Washington Post, Kahn insisted, "It's a social decision. This really speaks to the need for a larger policy discussion, and regulation or some kind of oversight of assisted reproduction."
But there is no reasonable ethical objection for using genetic testing to avoid disease. That's what medicine is supposed to do -- cure and prevent disease. Kahn is right that parents will someday use PGD to screen embryos for desirable traits such as tougher immune systems, stronger bodies, and smarter brains. It is hard to see what is ethically wrong with parents taking advantage of such testing, since it is aimed at conferring general benefits that any child would want to have.
Kahn is certainly wrong when he claims that the decision to use PGD by prospective parents is a "social decision" requiring more regulation. First of all, in the capacious sense implied by Kahn, any parent's decision to have a child even by conventional means has "social consequences" for us all. So would Kahn have neighbors, regulators, and bioethicists weigh in on everybody's reproductive decisions? Kahn would doubtless counter that unlike conventional reproduction, assisted reproduction involves the use of scarce medical resources that could be used for other purposes (which they prefer).
Again, Kahn's notion of "social" could apply to anything -- what if Kahn disapproved of someone buying non-union clothing or vacationing in the Caribbean rather than devoting his resources to building public parks or highways? In this case, the parents using assisted reproduction and PGD are spending their own money for the benefit of their own children to work with doctors who are freely devoting their skills. It's no more a "social decision" than if they had chosen to buy a Honda Civic.
On MSNBC, the usually sensible University of Pennsylvania bioethicist Arthur Caplan asked, "Testing for diseases that are going to appear 30 or 40 years from now, does that make any sense, since people are mortal?" One might think that a mother whose family has been grievously afflicted with this disease and who faces it herself is in a better position to decide than even the most brilliant academic bioethicist is. Surely it is the height of moral rectitude for a parent to spare her children the terrible fate that this mother knows lies in store for her. If it's all right to use efficacious medical treatments to cure a 40-year-old with Alzheimer's, it's all right to prevent him from getting it in the first place.
Caplan added that PGD procedures are certain to prove highly controversial "because that's really getting into designing our descendants."
What horrors do such designer babies face? Longer, healthier, smarter, and perhaps even happier lives? It is hard to see any ethical problem with that.