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Stories by RICK WEISS The 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.

Clones of clones are giving birth to other clones. Even the molecular underpinnings of such intangibles as mood and temperament are being identified.

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 policymakers 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 — even in a small way — 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 (preimplantation genetic diagnosis) 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 healthy baby.

Since then, 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 and rewarding 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 percent chance of inheriting the causative gene.

“We thought we would have children and take the chance,” said his wife, Denise. But then they heard that PGD could remove that element of chance.

“We asked a lot of questions and went back and forth,” Matt said. He couldn’t help but consider that had his mother had access to such a test, he might never have been born. Surely he deserved to have been born, he thought. But he was haunted by the image of his children succumbing someday to the family curse.

Five years ago, the Romingers became the first couple to use PGD to screen out embryos destined to develop Huntington’s. The results were Austin and Hannah, 4-year-old twins who need never worry about getting the disease or passing it on to their children.

Since then, the repertoire of rationales for using embryo screening has continued to grow, along with concerns about where it might stop. It has been used to help couples choose the sex of their next child. It has been used to screen out embryos that are not certain to get a disease, but simply have higher odds of getting a disease.

Most recently, PGD screening has been used to choose embryos not just because they have genes that promise them healthier lives, but because they carry genes that someone else needs.

Someone like Brandon Sunderland, 5, who is afflicted with chronic granulomatous disease, an immune system deficiency that has already killed countless others in the family line.

“He’ll be 6 in September,” Heidi Sunderland, his mother, said recently in a telephone interview from the family’s home in Queensland, Australia. “Some say he could live to his twenties or thirties. Most die young. You never know when it’s going to come, the life-threatening infection.”

Brandon’s only chance for a cure is a bone marrow transplant, preferably using umbilical cord blood from a closely matched newborn. His mom carries a copy of the culprit gene, which affects only boys, and the odds of her conceiving an unaffected child with Brandon’s exact tissue type were slim. But how could she not try?

She got pregnant last year, and she and her husband, David, had the fetus tested at 11 weeks.

“We found out it was a boy,” she said. “And it was affected.”

She had an abortion.

“It’s not a position you want to put yourself in over and over,” she said.

Soon afterward, Heidi and David were watching “60 Minutes” and saw a segment on the salvation of Molly Nash, 6, who was dying of Fanconi anemia, an inherited blood disease. Her parents, Lisa and Jack Nash of Englewood, Colo., had set out to create a sibling bone marrow donor for Molly, undergoing four cycles of in vitro fertilization to make a total of 30 embryos with Lisa’s eggs and Jack’s sperm.

Using technology largely developed by Mark Hughes, a former National Institutes of Health geneticist, scientists in Illinois had tested one cell from each of the 30 embryos and found that five of the embryos were free of the disease gene and also perfect tissue-type matches for Molly. Four embryos failed to take hold in Lisa’s womb, but with the fifth one, she became pregnant.

In September, Lisa gave birth to a boy, Adam. Soon after he was born, doctors transfused some of his blood cells into Molly’s veins, where they settled permanently into her marrow to do the job her own cells could not do. Adam’s preconception and selection prompted an unhappy phone call to the transplant doctor from the Vatican a few weeks later, but the doctor took it in stride. Molly was already getting better.

From their living room in Australia, Heidi and David Sunderland stared at their television as the Nashes’ drama unfolded.

“I looked at my husband and he looked at me and we said, ’That’s it. We could do that,’” Heidi recalled. “We called, and they got us through to Hughes. We said, ’Would you do it?’ And he said, ’Yes.’”In their household it is the present, and not the future, that matters. Every month that Brandon stays on steroids to deal with his disease, his bones get weaker. Every bout with a passing virus threatens to be his last.

“He goes to school when he can,” Heidi said. “Normally a week doesn’t go by without him being home with something.”

She and David calculate that they’ll need $60,000 to $70,000 to fly to the United States, pay for multiple rounds of in vitro fertilization, and live here for a few months while the resulting embryos are tested, transferred and watched to see if they take hold and grow in Heidi’s womb.

They don’t have that kind of money — he’s an auto parts salesman, and she stopped working as a hairdresser to take care of Brandon. To raise money, they’ve been holding auctions. There also have been community events and black-tie dinners.

The Catholic school that Brandon attends told the family it could not help with fundraising. To do so, school officials told her, would imply that the church agreed with what she’s doing.

“I’m Catholic,” Heidi said. “I believe in God. My opinion is, if God allowed this technology to be available, it’s because he wanted us to use it.”

So she has kept planning and raising money, moved by people’s understanding and generosity. “It really restores your faith in human nature,” she said.

The Sunderlands plan to arrive in the United States at the end of August or in early September. Mark Hughes will be in his lab, waiting. And another incremental change in human nature will begin.

Copyright © 2001 The Washington Post. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

Genetic technology raises issues of economics and fairness

As of now, there are no outside authorities — governmental or otherwise — stepping into decisions on whether, when or how to use PGD (preimplantation genetic diagnosis) technology. Nor are there likely to be any soon.

“Do you really want to start assessing people’s motives for having kids?” says Jeff Kahn, an ethicist at the University of Minnesota, summing up the consensus in the field. “Good luck. We just don’t do that, and we shouldn’t. Try to tell me if having a kid to do work on a farm is a better reason than having one to save the life of a 6-year-old.”

Kahn’s comments reflect an emerging view that there’s nothing inherently unethical about human beings taking control of their genome — what matters is how they use that control. And ethicists and scientists have no trouble identifying reasons to be concerned over embryo screening.

The most obvious reason is the idea of the designer baby, with its echoes of the eugenics movement of early 20th century America and its later adoption by the Nazis.

That baby is still a long way off — scientists have only begun to identify genes that affect such cosmetic traits such as height or skin color, let alone those for intelligence or temperament — but few people in the PGD community doubt that they will. As that menu of selectable traits grows, the complexion of America is sure to change in more ways than one.

“As parents assume responsibility for their child’s genotype, all kinds of notions of guilt and responsibility in households are going to change,” said Leon Kass, the bioethicist at the University of Chicago. “You will no longer be able to say to your kid with a big nose, or who can’t dance, or is irascible, ’Well, it’s just chance.”’

So far, parents and doctors who have used PGD almost universally decry the technology’s use for anything more than attaining full health. But even this use could alter family dynamics.

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It’s still not clear, for example, how well children like Molly Nash will assimilate the dual parental sentiments of “We love you” and “We didn’t want to have another child like you.” Molly Nash, 6, had been dying of Fanconi anemia, an inherited blood disease. Her parents, Lisa and Jack Nash of Englewood, Colo., had set out to create a sibling bone marrow donor for Molly, undergoing four cycles of in vitro fertilization to make a total of 30 embryos with Lisa’s eggs and Jack’s sperm. It is unclear how children like her brother Adam will cope with the knowledge that they were born, at least in part, to accomplish a utilitarian mission.

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What’s more, PGD and related technologies will force a recognition that the line between health and enhancement — between normality and perfection — is surprisingly fuzzy. Childhood vaccinations, almost universally considered to be beneficial, prevent disease by boosting the immune system. Does that mean it’s OK to pre-select embryos that test positive for beefed-up immune-system genes? Or would that cross some ethical line separating Jonas Salk and Doctor Frankenstein?

If immune-system maxi-genes are equivalent to vaccination, does that mean everyone should have the right to PGD for those purposes, just as all parents today have the right — indeed, the responsibility — to vaccinate their children?

The implications begin to spread like oil. At the center of those implications is a common theme: justice.

“I think the most serious moral worry here is fairness,” said Dan Brock, a philosopher and ethicist at Brown University. “These things are going to be expensive and not covered by health insurance … so they’re going to be available preferentially to the socially advantaged.”

Troy Duster, a sociologist at New York University, is not optimistic. He foresees a future steeped in what he calls “eugenics with a small e, not eugenics with a big E” — meaning that the more blatant forms of discrimination of past eugenics movements will give way to more subtle forms, challenging Americans’ concepts of inclusiveness and diversity.

“We have a market economy, so you know the answer,” Duster said. “Of course (PGD) is going to go forward, and the people who can afford these privileges will get them. It’s better to face up to that reality than maintain a fiction that we can have every person at the table.”

At the same time, few people in the field doubt that PGD will become another commodity subject to marketing, intensifying people’s desire to be at the table. Barbara Katz Rothman, a sociology professor at Baruch College in New York, fears the technology will prove almost hypnotically attractive.

“The lessons of history have shown us what happens when people are ordered as better and worse, superior and inferior, worthy of life and not so worthy of life,” she wrote in the October 1998 issue of the journal Gender & Society.

But unlike in previous holocausts, she wrote, “My children will not be led to genetic technology in chains and shackles, or crowded into cattle cars. It will be offered to them.”

Copyright © 2001 The Washington Post. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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