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Known Unknowns

Posted by Pete Shanks on December 2nd, 2008


Denise Caruso recently made the interesting point that "in many respects scientists know less today about these mechanisms [that govern living organisms] than they did even just five years ago." That may seem counterintuitive, given the undeniable advances in genomic sequencing technology, but in a vaguely Socratic sense, this can be counted as a useful development: At least we are beginning to understand how little we understand.

Several recent reports, from different areas, underscore this:

All this may seem like bad news for those whose approach to research is driven by the impulse to market products immediately. It's not necessarily: As Prof. Michael Chapman points out, "if your only way forward is IVF, then an increase in risk from one in 100 to two in 100 for most people is an acceptable risk." It's worth remembering also that bone-marrow transplants, for example, became treatments before the mechanism behind the therapy was understood at all.

But anomalies are good news for science: more problems to solve! And basic science -- whose funding need not and should not be dependent on specific applications -- is what is needed to produce real cures in the long run.

Picking the Best Baby

Posted by Jesse Reynolds on December 2nd, 2008

Better Babies contestants at the Indiana State Fair, 1929

The leading newspaper in Canada's capitol city published an essay by ethicist Margaret Somerville on the social implications of widespread genetic screening. In "A New Eugenics," she asserts that the clear message is that certain groups of people don't make the genetic grade, and should not have been born:

As harsh as the language is, we must ask ourselves: "Are we on a search-and-destroy mission to wipe out certain groups of people?"...

[A]re we implementing a new eugenics and, if so, what are its dangers? To respond we need to take heed of history....

Whether or not we like it, the message we will be delivering at the societal level is: "We don't want you in our society unless you measure up to a certain genetic standard. You are only a potential member, until you've passed the admission test that we are willing to pay for with our tax dollars and implement."

The unavoidable collective impact of these decisions is the implementation of negative eugenics with respect to disabled people and it's disingenuous to deny that.

Negative eugenic practices have historically taken various forms, from infanticide, on to prenatal testing and selective abortion, and then to preimplantation genetic diagnosis (PGD) in the last two decades. With the price of genetic sequencing plummeting, the next step becomes apparent. The technology behind the wide genetic scans offered by companies such as 23andMe could feasibly be used on an entire batch of blastocysts in a fertility treatment, enabling prospective parents and clinicians to pick the genetically "best." Such a process was just described by the assisted reproduction and stem cell company Reprogenetics, at a recent meeting of the American Society for Reproductive Medicine.

What might be the cost of a wide-scanning PGD? Traditional PGD presently costs a few thousand dollars over the price of basic in vitro fertilization, and has been used to select against a single gene at a time, generally one related to a serious disease that is known to be carried by one or both of the parents. As a baseline for some "back of the envelope" calculations, the service of 23andMe, which tests for 91 genetic variations, currently costs $400. At this price, applying it to an entire cohort of a dozen blastocysts, even with additional costs for extracting a single cell from each and amplifying their DNA, may become competitive.

If the additional cost of such a procedure were just a few thousand dollars, then prospective parents who already are using IVF may find it hard to resist. But could this become even more widespread? I would not rule out the future use of wide genetic scans for natural pregnancies. This would sometimes be followed by selective abortion, just as it now sometimes is for sex selection. In fact, there's a good chance genetic testing could be done using a pregnant woman's blood at just five or six weeks gestation, as is currently done with prenatal sex determination and possibly soon for monogenetic diseases such as cystic fibrosis.

But wide adoption may hinge on the cost-benefit analyses of insurance providers. In jurisdictions where a new baby is likely to have the same insurer for much of its life, such as nations with single payer health care, some may argue that the cost of a wide genetic scan plus IVF would warrant coverage in order to ensure a "genetically healthy" baby, even if there is no indication of genetically-related disease in the parents.

Of course, IVF remains a physically unpleasant process, and many parents would decline the service, even if free. At what point, though, might they face pressure from their insurer, government, or society at large to be sure their child will be the healthiest possible?

Previously on Biopolitical Times:

This Week in the News

Posted by Jesse Reynolds on December 1st, 2008

Here are a few stories that we've not covered here at Biopolitical Times. You can stay up-to-date on the news with CGS's news compilation, available as a web page, RSS feed, or weekly email.

The New York Times examined parents' use of a genetic test on their children. It looks for the presence of genes related to atheticism.

In the European Union, an appeals panel of the Patent Office upheld an earlier ruling that rejected an application for a wide-ranging patent on the derivation of embryonic stem cells. Opposition to the patent came from both the right and left.

The potential economic impacts of the imminent in California of the lifting of the restrictions on the federal funding of human embryonic stem cell research were explored by Bernadette Tansey in the San Francisco Chronicle.

The rich are different from you and me: Yes, they hire surrogates

Posted by Jesse Reynolds on December 1st, 2008

Kuczynski, baby, and baby nurse

The cover story of last week's New York Times Sunday Magazine is the latest in a regular tradition: The first-person journalistic account of assisted reproduction. (1, 2) In this case, author and new mother Alex Kuczynski describes how, after eleven rounds of attempted in vitro fertilization, she and her husband hired a gestational surrogate. The essay addresses the issue of commercialization in a manner that is simultaneously bluntly honest and painfully naive.

Here are some details, for context: Kuczynski has been the "Critical Shopper" columnist in the Times' Style section, where she reviews $545 purses and $1500 skirts, and splits her time among a Manhattan apartment called "the world's richest apartment building," Southampton, and the ski resort town of Ketchum, Idaho. The New York gossip columns can refer to her as "La Kuczynski." She's previously written a memoir of other voluntary medical experiences: Her book Beauty Junkies used her own self-confessed addiction to cosmetic surgery as a launching pad to investigate that burgeoning industry. Her husband is a billionaire who already had six children with three previous wives. They were married by the mayor of New York. Clearly, the $300,000 or so they spent on IVF and surrogacy was not an issue.

The featured photographs in the story don't just make the class - and race - issues clear; they make them cliché. Beautiful Mother holds her new baby on her lawn in front of her exquisite Southampton summer home, while the baby's personal nurse, who is black, stands at attention. Meanwhile, the surrogate is shown barefoot and pregnant (literally) on her weathered porch as a hound lounges next to her.

Although Kuczynski admits that the surrogacy industry is aware of, but conceals, its commercial nature, she initially claims that the financial component of gestational surrogacy didn't faze her:

Still, in our experience with the surrogacy industry, no one lingered on the topic of money. We encountered the wink-nod rule: Surrogates would never say they were motivated to carry a child for another couple just for money; they were all motivated by altruism. This gentle hypocrisy allows surrogacy to take place. Without it, both sides would have to acknowledge the deep cultural revulsion against attaching a dollar figure to the creation of a human life.

In fact, charges of baby selling have long tarnished the practice of traditional surrogacy, and charges of exploiting women have lingered even as more couples opt for gestational surrogacy. We were not disturbed by the commercial aspect of surrogacy. A woman going through the risks of labor for another family clearly deserves to be paid. To me, imagining someone pregnant with the embryo produced by my egg and my husband’s sperm felt more similar to organ donation, or I guess more accurately, organ rental. That was something I could live with.

Yet she goes out of her way to pick a relatively well-off and educated prospective surrogate:

When we came across Cathy’s application, we saw that she was by far the most coherent and intelligent of the group. She wrote that she was happily married with three children. Her answers were not handwritten in the tiny allotted spaces; she had downloaded the original questionnaire and typed her responses at thoughtful length. Her attention to detail was heartening. And her computer-generated essay indicated, among other things, a certain level of competence. This gleaned morsel of information made me glad: she must live in a house with a computer and know how to use it.

In our conference call with Cathy and her husband, Mick — the vice president of marketing for a credit union — we felt immediately comfortable. They had three children, two of whom were in college. Cathy and Mick sounded compassionate and intelligent.....

But there was something else that drew me to her — the same thing that caused me to see her computer-generated essay in a different light from the other women’s hand-scrawled applications. She and her husband were college-educated. Her husband graduated from William and Mary. Her daughter Rebecca, then 20, wanted to be a journalist. They lived in a renovated mill house on a creek in a suburb of Philadelphia. They seemed, in other words, not so different from us. Later, during the election season, she and I were unaccountably pleased to learn that we were both planning to vote for Obama.

Something tells me that had Kuczynski not had the good fortune to find an Obama voter, and was forced to stoop down to a surrogate who didn't complete her application with a computer, she still would have gone through with the process. Only now, she can perhaps reassure herself that she didn't exploit an economically vulnerable woman. After all, Cathy, the surrogate (whose daughter sold her eggs to help pay for college), is "not so different from" Kuczynski.

This self-consolation is hollow. If Cathy were infertile, would she be able to hire a surrogate? If Kuczynski were fertile, would she ever consider being one?

P.S.: For some additional thoughts, read the readers' comments at the Times' site.

P.P.S.: Read Thomas Frank's December 10 Wall Street Journal column on the essay.

Previously on Biopolitical Times:

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