Experts fear potential abuses of genetic screening

BY BETH WHITEHOUSE | beth.whitehouse@newsday.com

Over the next few generations, the use of preimplantation genetic diagnosis (PGD) may become as common as amniocentesis, predicted David Adamson, a California reproductive endocrinologist and president-elect of the American Society for Reproductive Medicine.

PGD could allow scientists to screen out diseases that run in a family -- such as breast cancer and Alzheimer's -- to ensure a healthy embryo, extending life spans to 90, Adamson said.

One bioethicist has coined a term for choosing the "best" embryo -- procreative beneficence -- suggesting that if a couple has the ability to produce the healthiest child, they have a moral obligation to do so.

"This is a technology that's going to redefine the next 100 years. It's going to determine how babies are born, and how we recreate ourselves," Adamson said.

Technique's use evolving

While PGD was originally meant to avoid life-threatening hereditary childhood diseases, some parents already are choosing embryos based on diseases that could develop much later in life, such as breast cancer. PGD also is now being used to avoid afflictions that aren't fatal, such as an eye-condition that could lead to blindness, said Mark Hughes, who does PGD testing at Genesis Genetics Institute in Detroit.

Hughes is comfortable with families trying to eliminate such diseases from their descendants. "No one understands these diseases better than the family who has it," he said. "We can sit around a mahogany table and debate this, but this family lives with the disease every day and knows it's serious enough to go through such extraordinary approaches to avoid giving it to the next generation."

While doctors such as Adamson and Hughes see the good in testing embryos for the avoidance of disease, others are chilled by what they see as potential abuse of the process. They point out that one day scientists may be able to pinpoint genes for such non-medical traits as hair color and height. So while parents are testing for Alzheimer's or cancer genes, they also would have the ability to test for preferred eye color or perhaps musical ability.

The science may move from guaranteeing a healthy baby free of certain diseases, to customizing the child.

"Will parents try to do that? Really select a child's characteristics the way you can pick the options on a car?" asked Thomas Murray, president of The Hastings Center in Garrison, N.Y., a research institute devoted to ethical issues in medicine and the life sciences. "Not many. But it doesn't take many to make it an issue."

'Micro-eugenics' a concern

Parents could end up engaging in "micro-eugenics," said Stanford University physician and bioethicist William Hurlbut, a member of George W. Bush's President's Council on Bioethics. Rather than a state-imposed program of eugenics, it would be the parents themselves who could one by one weed out genes they consider undesirable, he said.

"Someone could easily make the argument that being short is like a disease because it may result in social disadvantages," Hurlbut said. More complex traits, such as intelligence, will be far harder to influence because they depend on the interaction of many genes, Hurlbut said.

Such choices disturb ethicists such as Adrienne Asch at Yeshiva University in New York, who said parents should see children as worthwhile however they are, not as embryos to be selected into perfection.

"Ideally, and the word ideally is important here, people should be prepared to be parents of any child that could be born," she said.

Beyond family issues, some experts worry that as the science develops, insurance companies might move to require testing of embryos and, based on the results, deny the future child health or life insurance because that testing showed the child was likely to have heart disease or develop Alzheimer's.

Right now, there are no regulations or laws about how PGD can be used in the United States. Essentially, it is up to individual doctors and hospital regulations whether they will perform PGD for non-medical reasons.

"Responsible physicians hopefully will not perform PGD for frivolous reasons," said Zev Rosenwaks, director of the Center for Reproductive Medicine and Infertility at New York-Presbyterian/Weill Cornell Medical Center in Manhattan. "The theoretical applications of PGD are essentially in the science fiction realm. PGD is here to alleviate pain and suffering. If one follows that tenet, it is a relatively simple thing to follow."

Prior to PGD, families with a history of, say, Huntington's disease often did not have children for fear of passing it on, Rosenwaks said. "Some of the things we talk about having a potentially detrimental impact might actually be quite positive," he said of the use of PGD to single out disease. His clinic does 300 PGD cycles per year, primarily to test for genetic and chromosomal abnormalities. He will not do embryo selection for non-medical reasons, he said.

Anver Kuliev is the secretary of the Chicago-based Preimplantation Genetic Diagnosis International Society. He works with Yury Verlinsky in Chicago performing PGD.