Bringing up baby to save a sibling: How far should preimplantation go?
Bringing up baby to save a sibling: How far should preimplantation go?
Technology used to benefit sister
Ten years from now, newborn Adam Nash may find it interesting that his birth merited headlines across the country. "Embryo is Picked to Try to Save Sister’s Life" stated the Chicago Tribune on Oct. 2, 2000. "Baby Conceived to Provide Cell Transplant for Dying Sister" echoed the New York Times on Oct. 4. The headline for the Oct. 5 lead story in the Health News section of Salon.com read simply, "Designer Babies?"
Chances are, your ethics committee might have to establish a safety panel or oversight committee to address this scenario.
Lisa and Jack Nash of Englewood, CO, conceived Adam via in vitro fertilization (IVF) — a very common practice. However, the embryo that became Adam was specifically selected, using preimplantation genetic diagnosis testing, because it was a likely blood-and-tissue match for the Nashes’ older child. Six-year-old Molly has Fanconi’s anemia, a life-threatening condition that is often a precursor to leukemia.
Disclosure of the use of genetic testing, for the first time ever, to create a possible donor for another person raised many questions in the scientific and bioethics communities. Was this creating babies to provide genetic "spare parts" for others? Could parents eventually screen embryos for all kinds of genetic traits for all kinds of reasons in a quest for the ultimate perfect baby?
But, some experts question whether the Nash case simply represents an ethics red herring rather than an opening of Pandora’s bioengineering box.
"My opinion, not being directly familiar with the case, is that this family was very lucky in that a number of circumstances converged to allow this to happen," says Catherine Tesla, MS, CGC, a genetic counselor and faculty member at the Emory University School of Medicine in Atlanta.
According to statements the couple made in the Times article, the Nashes wanted more children but feared another child might be born with Fanconi’s anemia, as well. They were unwilling to pursue a more traditional prenatal testing route, which would have involved aborting a pregnancy if testing indicated the fetus was affected by the disease.
When offered the option of pursuing an IVF procedure in which embryos could be genetically screened prior to implantation in the womb, the Nashes realized they could both select an embryo that would not have the disease and — at the same time — might also be able to help their older child.
Baby Adam, once born, did not actually donate tissue, but blood from his placenta and umbilical cord was stored because it contained stem cells that could be donated to his sister.
Adam born to help Molly
Prenatal genetic diagnosis commonly is used to screen IVF embryos for possible genetic defects or markers for specific diseases, notes Tesla. So, this aspect of the case was not controversial. In addition, many private companies offer services that store umbilical cord blood for use later if the baby develops a blood or immune disease, or for donation to other people, she adds. This technology also is not new.
What could be considered controversial, however, is the fact that Adam’s conception was influenced by considerations about Molly’s health, Tesla adds. But, even that situation is not unheard of, she says.
"There have been cases of children who were conceived and born to be possible donors for siblings, where genetic testing was not involved," she says.
There’s the well-known case from 1990, for example, of Walnut, CA, resident Mary Ayala, who gave birth to daughter Marissa in hopes of providing her older daughter Anissa with both a sister and a bone marrow transplant. Ten years later, after a successful transplant, both girls are healthy and doing well.
"People questioned the ethics of their choice at the time. But, no one has said it shouldn’t be done," says Tesla.
Testing isn’t the issue
Certainly, no one is arguing that the risks and ethical implications of prenatal genetic testing should not be carefully considered in each case.
Centers that offer preimplantation genetic testing are faced with numerous ethical dilemmas about what types of screening they will offer and to whom. Additionally, fertility centers must develop policies to cover these issues all the time, says Tesla.
"For example, most centers have decided that they will not offer prenatal screening for the BRAC1 and BRAC2 genetic markers [that indicate an increased risk of developing breast cancer] because it is an adult-onset disease, and the marker indicates a higher risk, but does not indicate the child would definitely have the disease one day, only a higher chance," she says.
Concerns over slippery slope’
Questions about "where this will all lead" are appropriate any time new technology is used in a new way, says Ray Moseley, PhD, director of medical ethics, law, and the humanities at the University of Florida College of Medicine in Gainesville.
"There are two aspects of any issue that you need to consider before you can tell how legitimate a slippery-slope’ concern is," he states. "First, how likely is the situation to occur, or reoccur, and how serious is the potential for harm if it does?"
For example, he asks if there’s a real potential for people to decide to try to "turn out babies right and left that would help people who are alive now, and if that’s the easiest, best, and cheapest way to help them."
The answer to that question is probably no in this situation, Moseley feels.
"Even if you don’t look at this as a respect-for-persons’ issue, this just doesn’t strike me as a very efficient way to do this," he says. "In five years, we may have much better ways to produce stem cells, and we wouldn’t need to do this. No one really wants to deal with these thorny ethical decisions if they don’t have to."
IVF and genetic screening are difficult, expensive, and emotional procedures, he adds. It also seems unlikely that most people would consider doing this if the situation were not desperate or if there were an easier way to accomplish what they need or want, he adds.
Many of the ethical issues associated with new technologies actually arise in the interim phase of the technology, and not when the new technology is mature, he continues.
"Here at the University of Florida, we did some pretty controversial research on fetal tissue — neural tissue transplantation into spinal cords to help spinal cord regeneration," he relates.
Goal: Grow it in vitro
The research was very controversial because it involved obtaining fetal tissue from aborted fetuses, which involved a long clinical protocol that ensured the decision to abort the pregnancy was clearly separate from the decision to donate the tissue.
"But, the expectation was that we would eventually be able to grow this tissue in vitro and wouldn’t need to harvest it," he says. "The use of tissue from aborted fetuses was really a short-time mechanism. It wasn’t terribly efficient because you had to ask a bunch of people; it was a big hassle, and you had the political aspects, and it was a whole lot easier — and the quality control was a lot better — if you could grow it in vitro. So, the research eventually shifted to be on how to grow it in vitro."
The point, Moseley says, also is to consider whether this is an interim issue and whether something is done on an experimental or one-time basis, or whether it’s an issue of the technology becoming commonplace.
The second issue, the aspect of potential harm, is harder to assess, he says.
"You have to examine not just the potential harm to the individual — in this case, the baby — but the harm to society as a whole," he says. Does this degrade respect for individuals? Does it degrade respect for patients? Does it make it more likely for us to have abuses of this technology in the future?"
It is these risks that an oversight committee or a safety panel should be in place to address, he says. "That would be the most appropriate way to address those concerns."
Sources
• Ray Moseley, PhD, University of Florida, P.O. Box 100222, Gainesville, FL 32610-0222.
• Catherine Tesla, MS, CGC, Genetic Counselor, Emory University, 2711 Irvin Way, Suite 111, Decatur, GA 30030-1724.
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