New technology poses medical, ethical dilemmas

BY BETH WHITEHOUSE | beth.whitehouse@newsday.com

Doctors have formed embryos outside the body for almost 30 years, since the first in vitro fertilization was performed to aid infertile couples.

But when parents use preimplantation genetic diagnosis (PGD) to try to select a donor sibling, they no longer are choosing the embryo most likely to make a healthy baby. They are instead choosing the embryo they need to meet their goal of curing someone else.

Many members of the medical community seem comfortable with using PGD to select a new sibling to provide a bone marrow match for a sick child. Some even say there is a moral imperative to help a sick child if there is the medical means to accomplish it.

But, as with many procedures that involve the use of embryos, some ethicists and members of the general public become uncomfortable. Some ask whether the randomness of birth should be manipulated. These critics also fear that further technological advances will lead to selection for preferences that have nothing to do with medical needs, such as eye or hair color.

'Huge fan' of technique

Deborah Spar, a professor at Harvard Business School, last year published "The Baby Business: How Markets Are Changing the Future of Birth." While she argues for some regulation of the fertility industry, she's not worried PGD will be abused.

"I'm a huge fan of PGD," she said. "I think PGD is one of those technologies that can sound really scary to people." She said the use of PGD to avoid disease and provide a sibling bone marrow donor is "nothing short of miraculous."

Families with a sick child often undergo wrenching choices as they search for possible solutions.

"I understand that a family could create, out of love, a new child. The children are heroes and the children understand their role in the family," said Alan Fleischman, a pediatrician and member of the New York State Task Force on Life and the Law. "We often make sacrifices for one child, especially one with a chronic illness.

"We should not trivialize the pain families go through in making these decisions, or decide that they are being inappropriate, or that they don't really care, or that it's done without love for the new child," he added. "I would bet that anyone who spent time with a family in the throes of these problems would understand how hard this decision is, and how it's figured out with love and concern on the part of the family."

Some oppose the procedure

The PGD process for donor selection can entail rejecting embryos that are perfectly viable; their only "flaw" is not matching the sick child. People who believe life begins at conception consider rejecting embryos wrong; they are opposed to in vitro fertilization for the same reason, as unused embryos are either frozen for potential future use, donated for research or use by another couple, or left unused.

Jim Sedlak, vice president of the American Life League, a Virginia-based, anti-abortion organization with a U.S. mailing list of 350,000, believes the rejection of embryos is wrong.

"When an embryo dies, a human being dies," he said. "At fertilization, when the sperm and the egg join, the DNA is set at that point. Everything about that human being -- how tall they are going to be, whether it will be male or female, the color of the eyes -- all that is set at fertilization. Now you get to this variation where they do pre-genetic testing and the human being has to pass a test in order to be allowed to pass on to the next phase of their life. We are totally opposed to that."

And even if an already-born child is saved by a donor child, that doesn't justify it, he said.

"The emotions are with the child you can see and hold in your arms and photograph, as opposed to the children who are in the laboratory being conceived through in vitro fertilization and don't look like children to the average person," he added.

Even those doctors who don't believe rejecting an embryo involves the death of a human being are nonetheless uncomfortable producing healthy embryos they know won't be used, which is what happens with sibling matching. The embryo that appears healthiest may be passed over in favor of the match.

"While recognizing that clearly you can have excess embryos from many IVF cycles, the intent when we create those embryos is to create a baby," said Dr. David Adamson, director of Fertility Physicians of Northern California and president-elect of the American Society for Reproductive Medicine. "It's a residual effect of the intended act, which is to create a child. We see that as sort of morally different from creating healthy embryos we know they're not going to use. If we create embryos that are healthy but aren't a match, the concern is what's going to happen to those."

Adamson encourages his patients to donate excess embryos to research or to couples who want a child. His lab donates excess embryos to University of California, San Francisco for research.

Benefits of PGD considered