[Paleopsych] Science-Spirit: Testing Our Ethical Limits

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Fri May 13 15:50:35 UTC 2005

Testing Our Ethical Limits

    Reproductive genetic testing promises to screen out fatal diseases,
    pinpoint donor matches, and, potentially, design our offspring. Is
    that really what we want?

    by Trey Popp,

    In 1995, Laurie Strongin gave birth to her first child--a son who
    carried with him an unexpected inheritance. Henry had Fanconi anemia,
    a rare, genetically determined disease that culminates in childhood
    death. His only real hope for reaching adolescence was a cord stem
    cell transplant from a sibling with the same Human Leukocyte Antigen
    (HLA) tissue type. The next year, Strongin and her husband, Allen
    Goldberg, had a second son. While Jack beat the one-in-four chance of
    having Fanconi anemia, he wasn't a tissue match. Those odds were

    It was during that second pregnancy that doctors presented Strongin
    and Goldberg with an enticing possibility. It might be possible, they
    said, to augment the standard process of in vitro fertilization (IVF)
    with a new technique called preimplantation genetic diagnosis (PGD).
    This would allow them to screen embryos in a search for one that
    didn't have Fanconi anemia and was a donor match. If the resulting
    pregnancy was successful, blood from the newborn's umbilical cord,
    which contains the hematopoietic stem cells that are more successfully
    grafted into a recipient than bone marrow cells, would be used to
    change Henry's fate.

    "The decision was easy for us," Strongin says. "It felt like it would
    save two lives at once." Statistically, it would not be easy to
    produce an embryo that had the right set of cell-surface antigens
    because not only were the odds long to begin with, but every round of
    hormone treatment would produce only a handful of eggs. The first
    three cycles didn't yield the right combination, but Strongin and
    Goldberg pressed on. The next three cycles went the same way. "It was
    a new science," Strongin recalls, "and I think that a lot of times,
    new things don't work the first time."

    And sometimes, new things don't work at all until it's too late. As
    Strongin was going through her ninth cycle, Henry died.

    Since that time, at least 2,000 babies have been born with the aid of
    PGD. Costs are decreasing, now hovering around $15,000-- of which IVF
    constitutes the vast bulk of the expense. Parents have used the
    technology to prevent the birth of babies with Tay-Sachs, cystic
    fibrosis, Down syndrome, and a variety of other conditions that arise
    from single-gene mutations or chromosomal abnormalities. It also has
    been used successfully to the same end that eluded Laurie Strongin.
    And Henry.

    Reproductive genetic testing technologies like PGD are becoming
    increasingly common, but, for the most part, are familiar only to
    couples burdened either with infertility or unfortunate genes. As with
    many new technologies, regulation is haphazard and standard practices
    have yet to evolve--which is, in its own right, cause for concern. But
    the debate over the ethics of reproductive genetics is gathering
    momentum on other levels as well.

    "One foundational ethical concern for some of our members is the
    notion that screening requires discarding those embryos that don't
    meet the prerequired standard," says Carter Snead, general counsel for
    The President's Council on Bioethics. "The destruction of embryos is a
    source of great ethical disquiet for some members of our council.

    "There are also worries from some members of the council that the more
    genetic control you're exercising over your child's conception, the
    more we move in the direction of manufacture, where children are not
    regarded as random gifts, but are regarded as the object of the will
    of the parents," Snead continues, adding concerns about the potential
    psychological harm done to children selected for a specific trait to
    the list of worries. "And this becomes even more amplified when you're
    talking about nontherapeutic or nonmedical traits."

    Awareness of these issues is beginning to spread to the general
    public. The Genetics and Public Policy Center at Johns Hopkins
    University recently unveiled what it bills as the most comprehensive
    measurement of public opinion about reproductive genetics to date.

    "There was a vacuum in the whole area of reproductive genetic policy
    because it's so contentious and so divisive that nobody was really
    occupying that niche except in an advocacy posture," says Kathy
    Hudson, director of the center. "There were the technology enthusiasts
    on one end, who are portrayed as having never met a technology they
    wouldn't like to try and never met a regulation that they would
    support. And at the other end are conservative religious voices who
    are very wary of the hand of science intervening in human

    What emerged from Hudson's work was a picture with considerably more
    nuance--especially in comparison to the rigidly polarized abortion
    debate that occupies similar ground. Two-thirds of Americans seem to
    be comfortable with the idea of using PGD to prevent fatal childhood
    diseases or to produce a tissue match in a case like the one Strongin
    and Goldberg faced--even though the technology involves the creation
    of some embryos that will be destroyed. Selfdescribed fundamentalist
    and evangelical Christians tend to be more wary, but slightly more
    than half of them support the use of PGD when searching for an HLA
    tissue match. Approval levels do fall across all groups, however, when
    it comes to reducing the likelihood of adultonset diseases, choosing a
    child's gender, or selecting traits like intelligence or strength
    (which is currently impossible).

    Unsurprisingly, survey participants of all social and ethnic
    backgrounds voiced fears that advances in reproductive genetic
    technologies may lead to a new era of eugenics. Yet even those who
    advocate some sort of ethics-based regulation are reluctant to limit
    their own choices. "I think that people are able to hold, at the same
    time, views and values that appear to conflict," Hudson says. "They
    are concerned about eugenic applications, but they want to make sure
    that individual, private reproductive decisions are protected. So on
    the one hand, they're worried. On the other hand, they're worried
    about what you would do to address that first worry."

    Aside from the general laws governing medical laboratories and the
    doctorpatient relationship, there are few rules that specifically
    address genetics testing. "It's incredible to me that there is no
    regulation whatsoever," says Arthur Caplan, director of the University
    of Pennsylvania Center for Bioethics. "There isn't even regulation of
    what tests can be offered by whom--forget about whether people should
    pick it. If I open up a clinic and say I'm going to do genetic testing
    on embryos, I don't even have to satisfy any kind of standard
    licensure requirement."

    As a matter of principle, Caplan does not oppose using PGD to weed out
    gene mutations or even to select for desirable traits, were such a
    thing to become possible. But, he cautions, focusing simply on
    reproductive genetic technologies may have the indirect effect of
    diverting our attention from more pressing problems. "If there really
    was a demand for taller, faster, stronger kids, I would worry that
    that might distort the ability of people who are truly sick and truly
    disabled to get resources. They don't get them now, frequently, and
    there would be even less chance if a lot of our resources went toward
    designing our descendants. So I see it more as a justice issue."

    The question of equitable distribution of healthcare resources
    surfaces often in bioethics circles. Glenn McGee, editor of the
    American Journal of Bioethics, has written extensively about
    reproductive genetics testing. He observes that evaluating PGD in
    economic terms can be a powerful argument in its favor. "PGD framed as
    simple medical endeavor is a no-brainer. Take cystic fibrosis: Who
    wouldn't say we should have PGD for free for any couple that's at
    risk? It costs $2 million, $3 million, $4 million in average lifetime
    expenditure, at least half of which is covered by state insurance.
    Plus, you've got the social cost of people going bankrupt trying to
    care for their child. So why not cover it?"

    But not everyone is so certain that doctors, genetics counselors, or
    academics ought to be making these kinds of decisions. "Professionals
    have stupid ideas about life with disability," says Adrienne Asch, who
    teaches ethics at Wellesley College in Massachusetts. "Uninformed,
    uneducated, narrow notions. And their curricula and media images and
    bioethics have not helped them adequately.

    " The idea that cystic fibrosis qualifies as a condition to be
    eradicated by PGD infuriates Asch. "The mean life expectancy is over
    thirty years for cystic fibrosis. You can live longer than that," she
    says. "You can go to school, you can grow up, you can play with your
    playmates, you can have friends, you can get married, you can have a
    job. Yes, you're going to die, and you're going to die sooner than if
    you don't have cystic fibrosis, but you can have a very interesting
    and complicated and rich life before you die."

    Asch is not alone in arguing against the notion that life with a
    disability is to be avoided at all costs. She cites the National Down
    Syndrome Congress, the Spina Bifida Association, and similar groups as
    allies. "People claim that the only ones who talk about this are
    right-wing, religious zealots," Asch says. "They're wrong. Lots of
    people talk about what we want out of life."

    So what do we want out of life? For better or worse, technologies like
    PGD are allowing parents to avoid that question by asking another:
    What do we want out of our children? In a free and unregulated market,
    services will spring up to offer all kinds of answers. For a little
    more than $18,000, a clinic currently operating in California offers
    parents PGD solely for the purpose of selecting the gender of their
    offspring. Business is good.

    "Whatever people say when you poll them, all that really matters is,
    are there clients?" says McGee, the bioethicist. "And there just are.
    There are clients that want PGD, and the more services that are
    offered, the more people line up. It's quite clear from my research
    that the more these services become available, the more people will
    avail themselves of them."

    Looking to the future, McGee worries about the psychological impact
    high-tech pregnancies may have on the children resulting from them.
    "The birds and the bees are gone," he laments. "With multiple people
    involved, you've got the ants and the termites. The children's story
    for a child who's made with PGD is just different. There's no fate.
    There's no accident. It's all about planned parenthood. And in some
    ways, that's a good thing. It's not that it's bad--it's that kids need
    to have some sense that they're not a product."

    There is little question that now is the time to start thinking about
    where reproductive genetic technologies may take us, and who should
    have a say in plotting that course. But there is also good cause not
    to get carried away. The age of ants and termites has not yet dawned,
    and may never. Mark Hughes, the doctor who directed Strongin's PGD
    almost a decade ago, cautions that our ability to manipulate
    reproductive outcomes is severely limited not just by our lack of
    knowledge, but by biology itself.

    Single-gene disorders are one thing, he says, but most diseases and
    traits are governed by a variety of genes working in concert and
    mediated by environmental factors. The odds against the appearance of
    a desired trait are only lengthened by the limitations of our
    reproductive systems. "Biology is going to put up a wall," Hughes
    says, insisting PGD is simply not a sensible tool for customizing

    Consider Laurie Strongin, who was overwhelmed by the odds when just
    two gene markers were in play. "It's dangerous to simplify this into
    something about parental preference and ease of use," she warns.
    "Since we went through all this, I've heard people trying to compare
    PGD to the idea of designer babies, worrying about parents taking a
    willy-nilly approach to their reproductive choices. There's nothing
    willy-nilly about choosing life or death."

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