Brave New Babies

With genetic screening, doctors can now test a fetus or an embryo awaiting implantation for a long and growing list of medical conditions, from Down syndrome to cystic fibrosis to heart defects. But, experts say, the enormous preventive and therapeutic possibilities of current genetic testing might also quickly presage a market-based eugenics among prospective parents.

While many screenings reveal only higher probabilities of certain diseases, they often lead parents to decide against implanting an embryo or carrying a baby to term. Similarly, early genetic testing has also been used by couples to select the sex of their children — a practice the American College of Obstetricians and Gynecologists officially opposes unless it’s done for a medical reason, such as a family history of a disease that primarily affects one gender.

“There’s nothing that’s forbidden right now,” says George Annas, the Edward R. Utley Professor of Health Law, Bioethics, and Human Rights at the School of Public Health. “The direction in which we’re heading is to permit individuals to use the medical technology in almost any way they want.”

While many contend that genetic testing is all about patient autonomy and the right of parents to make informed decisions about their health and the health of their offspring — to seek early potential treatments or to prepare themselves for a child who may have special medical needs — others argue that physicians must, as Annas says, “take very strong ethical positions and follow them.” The alternative is to risk inviting a world in which certain genomes, and hence certain people, are viewed as more valuable than others.

BU Today: What genetic tests of a fetus or embryo are currently possible?
Annas: You can do preimplantation genetic diagnosis of embryos for couples doing in vitro fertilization, to screen the embryo to see if you want to use it to create a pregnancy. But most of the time, people get screened when they’re already pregnant, and they’re looking at the fetus to see if it has some major genetic problem, such as anencephaly, cystic fibrosis, Down syndrome, or spina bifida. You can also screen prospective parents to see if they’re carrying recessive genes for medical conditions.

Right now, you can look for any disease caused by a single gene. There aren’t a lot of those. Huntington’s disease is a classic one. In the future, you’re going to be able to look for ones that are more complicated, that are caused by a sequence of genes, for example — like Alzheimer’s disease, Parkinson’s, and other types of neurological disorders.

Geneticists are learning more and more every day, and one of the things they’re learning is that it’s much more complicated than anybody thought it was. There are some single genes that will tell you if you’re going to get a disease. But most genes don’t cause disease, and they interact with other genes in ways that become geometric very quickly. It’s extremely difficult, if not impossible, to predict what would happen if you turned off a gene or added a gene. Plus, the environment can affect gene expression, including the fetal environment.

What do you think of sex selection of embryos or fetuses?
Gender is never a sufficient reason to terminate a pregnancy, and even though we say you can have an abortion for no reason — you don’t have to give a reason — if you gave that reason, then it would be unethical to do the abortion. If we’re talking about screening embryos before there’s a pregnancy, then we get a lot more discussion, because there’s no abortion — you’re just deciding which embryos to implant.

But I really don’t think doctors should get into the business of this at all, even though I recognize that they already are in the business. There are many physicians who say doctors shouldn’t be paternalistic and make all the decisions for a patient. They say, no, we’re not deciding anything, whatever the couple wants, that’s what we do. We’re just doing it because there’s a demand for it.

Nevertheless, once you select embryos or fetuses based on gender, there’s no end to it. You can’t say, well, I can’t do eye color or hair color, because you’ve already crossed the threshold. It’s not a bright line, but basically the threshold is medical — diseases and conditions. Theoretically, that’s what doctors should deal with; they shouldn’t be in the business of designing babies. Babies aren’t products.

Isn’t there some debate about what’s genetically “normal” and what’s a disease?
Yes. For instance, once I said at a conference that you don’t want to screen for any specific physical characteristic, and somebody said, well, what do you think Down syndrome is? I was a little taken aback by that. I mean, that is a specific physical characteristic, but it’s one that we’ve identified as a disease or a disability. Now, the disability community says that’s why they’re against all this. They say, look, we have this disability, and if you’re going to screen for that and a patient wants to abort or not implant to start a pregnancy with somebody with my condition, then you’re saying I shouldn’t be alive. It can get a little extreme. But I can understand that argument. After all, the Nazis did go down that line. They first said, you guys shouldn’t reproduce, and it wasn’t long after that when they said, why should you guys be alive?

George Annas, Edward R. Utley

Professor of Health Law,

Bioethics, and Human Rights

at the School of Public Health.

I think we’re a long way from that. But there’s also the classic hypothetical case of the deaf couple who want to have a deaf baby, so they want a prenatal test, and they want you to abort if the child is a hearing child. I don’t think doctors have any business doing that. And I think it’s very easy to say no way.

Some people compare prenatal genetic screening with the eugenics movements of the early twentieth century. Do you agree?
There’s nothing that’s forbidden right now. So the direction in which we’re heading is to permit individuals to use the medical technology in almost any way that they want to. Still, right now, these practices are seen primarily as a medical market good, which puts it beyond a lot of government control, whereas many of the eugenics programs used government coercion, dictating who shall and shall not have children based on a genetic ideal.

Today, there are a lot of studies of genetic associations with diseases that are more prevalent in a particular racial or ethnic group. And the question is, at what point do you identify an ethnic group as genetically suspect? You don’t have to say they shouldn’t have babies or they shouldn’t live. You could just say, we’re going to charge you higher insurance premiums, or we’re not going to hire you because you’re likely to get sick and become a more expensive employee. So, anytime you do that, obviously, you have a possibility or even a probability of discrimination, whether the correlation is real or not.

Geneticists will tell you that there’s more genetic diversity within ethnic groups than there is between one ethnic group and another, which means that even if you have some correlations within that ethnic group, you have no idea whether this particular person has that problem, but he may have a higher probability of having it than someone in the general population. That could be, in some clinical circumstances, useful information. But I’d say these are studies you need to be very, very careful with.

Should there be any laws against certain genetic testing of embryos or fetuses?
I don’t think so. Not yet. The last group I want involved in this is Congress. Now, if doctors start doing things that aren’t medical, that’s a different question; then somebody’s got to say you can’t do that. I don’t think they’ve crossed the line yet, as a group. But again, we’ve got to go back to our early history of sterilization in the United States and then Nazi Germany and ask, if we get the state involved in reproduction, then where will we go next? But we can only avoid it if physicians take very strong ethical positions and follow them. The physicians cannot have the consumer model.

Chris Berdik can be reached at cberdik@bu.edu.