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Ethical Questions Arise as Parents Screen Out Embryos

July 30, 2001|RICK WEISS | WASHINGTON POST

Gweneth and Jeff Berkowitz are going to choose their next baby. They will examine the candidate embryos they've made, one by one. They will submit each to the latest genetic screens. They will select only the best--and reject the rest.

Gweneth, 30, and Jeff, 31, are not afraid to grab the reins from evolution or nature--not since the birth and death of their daughter, Logan, a few months ago.

"You see this child and hold her, and that bond is created," Jeff Berkowitz said. "And to just have her for five weeks, and then to carry this pain with you for the rest of your life, is just too much."

Logan Berkowitz had myotonic dystrophy, a muscle-wasting disorder she inherited from her mother, who was unaware that she carried the gene that causes it. Born beautiful and floppy on New Year's Eve 2000, the girl barely had the strength to breathe.

Now, five months after she died in February, her parents are planning to take advantage of new tests that will tell which of their embryos are doomed to suffer and die. Only those found to be free of the faulty gene will be transferred to Gweneth's womb.

Embryo screening--known as preimplantation genetic diagnosis, or PGD--is a gift from God, the Berkowitzes say. Others call it a tool for human hubris.

PGD is one of several new genetic technologies that are turning the world into a living laboratory in which many of the old rules of biology no longer apply. Genes from wholly unrelated species are being swapped and recombined with kaleidoscopic caprice, creating new entities that would never have evolved on their own.

These new technologies are bringing the fate of the species within human control. They are offering the opportunity to redefine, with unprecedented precision, what it means to be a person.

This biological transformation is outstripping the ethical vocabulary that has guided modern scientific decision making. The dilemmas it creates often do not involve familiar questions of right and wrong, but wholly new problems of a new human condition.

The genetic revolution is proceeding without clearly marked, spectacular advances that might make it easier to debate and comprehend. Rather, it is occurring by increments, as a result of private decisions, in spheres where policy makers and regulators have feared to tread. PGD offers an example of how humanity's redesign of itself is progressing one small decision at a time.

Specifically, embryo screening has made it possible for families to sidestep their genetic fates. It's a simple-sounding but momentous human achievement: This technology is allowing the human race to pick out unwanted parts of its genetic code, in effect allowing the human genome to shape itself, remake itself--to purify itself.

"Scientists and parents now have the power and the prerogative to decide what's a good enough inheritance to get not only into Harvard, but also into life," said Leon Kass, a bioethicist at the University of Chicago.

"But what are the new standards going to be, and where are they going to come from? Who has the wisdom to say these 'improvements' are going to make us better human beings? We really are at a crossroads."

Gweneth and Jeff Berkowitz recognize that they are part of a larger revolution, that their decision to choose which traits to pass on to their children has deep implications for the future of human procreation. "We've thought about this and talked about this a lot," Gweneth said.

"We're not designing our own child with blue eyes instead of brown," Jeff said. "We're not looking to create the perfect genetic child. All we're trying to do is have a healthy baby."

So next week they will fly from their home in Hampton Falls, N.H., to Michigan to see the doctor-scientist who pioneered PGD in the United States, in the hope of becoming players in a brave, new and better world.

In choosing to screen their embryos, the Berkowitzes joined a movement that had its beginnings in 1992. That's when scientists first showed they could remove a single cell from an eight-cell human embryo, conduct genetic tests on that cell and, if the results were reassuring, transfer the remaining seven-cell embryo to a woman's womb to develop into a baby.

More than 1,000 couples worldwide have trusted their gene lines to this technology, with most doing so to preclude certain suffering and early death among their offspring. In recent years, couples have begun to use embryo screening for other purposes.

Matt Rominger of Indianapolis, for example, carries the gene for Huntington's disease, a neurodegenerative syndrome that steals its victims' minds--but not until late adulthood, by which time a person can have led a full life.

Matt is still healthy at age 37, but has watched the disease kill aunts, uncles and, five years ago, his mother. A test in 1992 told him that his fate would be the same as theirs--increasing physical immobility, seemingly psychotic outbursts, loss of intellect--and that any child he sired would have a 50% chance of inheriting the causative gene.

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