Parents undergoing in vitro fertilization can now choose embryos based on their genetic risk of cancer and Alzheimer’s. That’s thanks to pre-implantation genetic diagnosis (PGD): genetic testing carried out after in vitro fertilization but before a fetus is returned to its mother’s womb. The number of testing options is rapidly growing as scientists discover genetic variants linked to myriad health problems, including cancer, heart disease, and diabetes.
The surge in the number of potential tests brings the ethical quandaries associated with PGD back to the forefront. Currently, no laws exist in the United States governing the use of PGD. So doctors, clinicians, and their ethical-review boards are called on to make complex ethical decisions, such as if parents can choose the sex of their baby for nonmedical reasons or be allowed to screen embryos for diseases that they may never develop or that may only strike late in life.
Vardit Ravitsky, a bioethicist at the University of Pennsylvania, studies the ethical issues surrounding PGD. She says that the regulatory situation in the United States needs to change and outlines her view for Technology Review.
Technology Review: PGD has been plagued with ethical concerns since its creation more than a decade ago. What are we using PGD for now, and what are some of the ethical issues that arise?
Vardit Ravitsky: There is a spectrum of PGD tests that starts with strict medical use–PGD for single-gene diseases that strike early in life and are fatal, like Tay-Sachs. The sense in the bioethics community is that these uses are very appropriate–using a new technology for the ultimate medical goal of preventing suffering.
Further in the spectrum is the use of PGD for late-onset disease or for genes that increase risk of a disease. Here, the ethical issues become more complex. Some people feel this is absolutely inappropriate use. My sense from talking to clinicians is that they would be reluctant to screen or select against embryos that carry genes that increase risk because we don’t know enough at this point. They argue that if we cross that line when we know so little, we are engaging in eugenic activities.
Bioethicists seem to have less objection to this use. They often emphasize parental autonomy, the right to choose what they want for their children.
TR: In the United States, who decides which tests are acceptable?
VR: At the end of the day, today in this country, the clinics are the gatekeepers. If you have cash and can find a clinic to provide the service, you can get it, whether it’s a test for Huntington’s disease or sex selection.
TR: Do we need more regulation?
VR: Few papers in the medical literature say the U.S. situation is really too open, but we do need to regulate at least some aspects of human reproduction. In the United Kingdom, one central body regulates everything involving reproduction and human embryos. Many people in the U.S. think we should try to adopt some elements of this system. But in a big and diverse country like the U.S., it’s not feasible to adopt the full approach. We have religious controversy over embryos and a notion of reproductive freedom that is probably the strongest in the world.
TR: What are the benefits of the British system?
VR: It has one centralized authority that decides on policy, and often these decisions are based on a process of public consultation, so it is actually the outcome of a democratic process. But I’m not sure the U.S. is socially and politically in a place that is capable of making decisions based on public consensus.
TR: One of the biggest fears with PGD is that parents will want to select embryos that are genetically predisposed to being superb athletes or good at math. Would it be wrong to do those kinds of tests?
VR: When you get to enhancement selection, such as choosing physical traits or personality traits, there’s this tension between the fear of eugenics on one hand and reproductive freedom on the other.
Some people argue that a new ethical principle is emerging: procreative beneficence, the responsibility to benefit future children as much as we can. If you can bring a child into this world with better genetic equipment, it is our ethical obligation to do so, just like providing medical care.
On the other end of the spectrum, people argue that this kind of testing will modify our relationship with our children. Until now we saw them as gifts. What we got was what we got. Once we try to control their identities, we’ll see them as commodities, a product that should meet a certain standard. If you bought genetic equipment to have an athlete, will you be upset if you get a musician?
This argument is supported by a lot of social change we see anyway. We’re hyper-parenting, pushing our children very hard. We send them to the best schools and a lot of extracurricular activities, and we expect perfection. Once we can use genetic tools, it will just go out of control.
I suspect if we ever regulate anything in this country, it might be these uses. For example, lately we’ve seen a lot of literature about the God gene, the notion [that] there is genetic basis to faith or spirituality. If we ever get to the point where we can influence such complex traits, public outcry will be such that we might be able to regulate against certain uses.
TR: Is biologically altering an embryo different than socially altering a child?
VR: That depends on what you think about genes and the environment–the nature-nurture debate. I personally think that although there are significant differences between educationally and genetically shaping the identities of children, in many ways they are similar. I’m a strong believer in genetics, but you can never reduce human talent to genetics.
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