When physicians at University College in London recently announced the birth of what they described as the world’s first “breast-cancer gene-free baby” – a designer infant pre-screened for the BRCA1 cancer gene – critics focused public debate on the question of whether such screening should be permitted.
Yet as genetic screening becomes increasingly routine, it is the opposite question that will likely raise far more ethical challenges:
If pre-implantation genetic diagnosis during in vitro fertilization (IVF) can successfully prevent children from developing serious illnesses, why shouldn’t such screening be required?
Women who carry the BRCA1 gene have approximately an 80 percent chance of developing breast cancer and a 40 percent chance of developing ovarian cancer. The mother in this particular case opted for screening after the mutant gene had triggered malignancies in her husband’s mother, sister, grandmother and cousin.
While breast cancer can be treated – five year survival rates now stand at 88 percent – a girl born without BRCA1 has a drastically reduced likelihood of confronting mastectomy or chemotherapy.
Since 2005, British doctors have used the same technology to prevent retinoblastoma, a defect that causes blinding pediatric tumors. More recently, parents have been permitted to screen out highly genetic forms of colon cancer. There is no evidence that the procedure causes any adverse side effects for the offspring
The most obvious advantage of mandatory screening is that it will reduce the long-term suffering of the children who are spared disease.
At the same time, preventing future cancers will certainly save tax dollars. These savings could be redirected toward researching new therapies and providing quality care for current patients.
The money might also help to defer the enormous public costs of fertility therapy, coverage for which a growing number of states now require of private insurance plans.
If all policy holders are indirectly subsidizing fertility therapy through higher healthcare premiums, it does not seem so unreasonable for them to ask that the couples who benefit try to produce healthy kids.
While similar screening cannot realistically be imposed upon individuals conceiving “the old-fashioned way,” for obvious reasons of logistics and privacy, these invasive aspects of screening do not apply to IVF.
Opponents of mandatory screening likely will point out that such a rule significantly limits the reproductive autonomy of parents. This is certainly true.
However, Western societies long have acknowledged that parental authority cannot undermine the medical interests of a child. Jehovah’s Witnesses may not deny their children blood transfusions; Christian Scientists cannot substitute prayer for life-saving antibiotics.
As United States Supreme Court Justice Wiley Rutledge wrote in the landmark case of Prince v. Massachusetts, “Parents may be free to become martyrs themselves, but it does not follow that they are free, in identical circumstances, to make martyrs of their children.”
Child welfare laws certainly prevent a mother from intentionally exposing her daughter to an environmental toxin that produces an 80 percent risk of future cancer. Our society would view this act as child abuse – and rightly so.
Similarly, American courts consistently compel pediatric cancer therapy, even when parents object.
Yet once one accepts the right of the government to elevate the best interests of the child over the parents’ private wishes, as we do in our society, the distinction between mandating pre-implantation screening and requiring post-birth care appears to be both arbitrary and indefensible.
The fear expressed by many opponents of genetic screening, both elective and mandatory, is that our civilization is sliding down a slope toward selecting embryos for their skin complexion or their eye-color.
These skeptics equate all forms of eugenics, even benign and socially-beneficial programs, with Nazi sterilization laws and unscientific theories of racial superiority. The reality is that pre-implantation genetic selection, like many technologies, can be used either for good or for evil.
On this continuum, the prevention of serious illness seems like an unambiguous and inimitable good. Maybe the benefits are so clear-cut that opting out shouldn’t be an option.
Jacob Appel, M.D., taught bioethics at Brown University for many years, practiced healthcare law in New York City and Rhode Island, and publishes frequently on issues at the nexus of law, philosophy and medicine. His essays in these fields recently have appeared in The New York Times, Chicago Tribune, Providence Journal and many academic publications.