Life as an Extreme Sport

The Daily: Finding Saviour in a Sibling

Finding a savior in a sibling
Publish Date: 2006-04-17

This at last is bone of my bone and flesh of my flesh.

The paper reads, “‘Designer Baby’ clinic to charge ?6,000 a child.”

That’s a lot of money, even for an in-vitro fertilization (IVF) kid. The second sentence in the article explains, in a simple phrase, why: Savior siblings.

Savior siblings are not a new concept, and parents have been creating them for years.

Parents of sick children will, after all, go to great lengths to help their child, and savior siblings are children born in the hope that they will be genetic matches for a sick relative.

This option took on new life in 2000, when Adam Nash was born.

The Nash’s had a little girl with a disease that causes leukemia, and often death at a young age. Doctors theorized that cord blood from a donor would extend Molly’s life and prevent leukemia.

(Cord blood contains adult stem cells. The recipient is irradiated, killing his or her original bone marrow, and then infused with the blood. The stem cells migrate to the bone and begin creating new marrow.)

Molly’s parents underwent 4 rounds of IVF therapy combined with pre-implantation genetic diagnosis (PGD), ultimately creating 24 healthy embryos. Of those embryos, five were a match for Molly, and one implanted and was brought to term.

At Adam’s birth, the cord blood was collected; a short time later it was infused into Molly.

Today, Molly is an active sixth grader, thinks her younger brother is a pest, and adores her baby sister, Delaine.

Until now, Adam and the handful of other savior siblings have been a relative rarity. Most insurance companies will not cover IVF, let alone an IVF/PGD combination, and the out-of-pocket cost is staggering.

If the prospective parents can get around the cost hurdle, they still have to find a doctor, or a willing team of specialist doctors, to assist them. While many doctors have the expertise, the controversy around the practice has limited its availability.

This controversy is what brings designer-baby clinics to the news this week.

What, exactly, is that controversy?

First, people criticize the idea of savior siblings by saying that instead of each individual being an end unto themselves, savior siblings are used as a means to an end and that children should be wanted solely for being that child, not for being spare parts for another.

But the argument almost never stops at this admittedly valid concern.

Instead, it deviates.

It ceases to be about savior siblings, or even about a baser debate around IVF/PGD and whether it is an active form of eugenics.

The argument goes from what is possible to potential, from medicine and eliminating disease to a blonde-haired, blue-eyed, post-Nazi era, speculative fiction-fueled, designer-baby slippery slope.

This, inevitably, is where the debate circles and stops, going no further. That’s the shame in this whole mess.

Saying that creating babies that are free of a genetic disease, or are tissue matches for siblings, will lead to a genetically designed race of tall, blonde, buxom and blue-eyed babes who can all play the piano like Beethoven while writing like Austen is a non causa pro causa fallacy.

This sort of causal fallacy says that if A happens, then by a small series of indeterminable steps, Z will eventually happen and since they are tiny steps, we won’t be able to draw a line that should not be crossed.

And if Z shouldn’t happen, then neither should A.

The problem with this argument should be very clear: Anything has the potential to be used for ill.

What we should focus on is not the technology, but the people using it.

What we should focus on is not trying to stop medicine from preventing illness and curing disease, but making sure people are educated about the possibilities inherent in technology.

We should be discussing the idea of savior children and whether it’s okay for a human being to be created as a means to an end, or if those who’re so intentionally created have more thought gone into them than most.

The Daily: She Wore a Slinky Red Thing

She Wore a Slinky Red Thing
Publish Date: 2006-04-10

This op-ed was pitched as being a weekly take on medicine in pop culture. I figured it would give me a chance to rant, rave, and giggle about some of my favorite subjects: House, Grey’s Anatomy, the Law and Order franchises, whatever came to mind and seemed interesting.

It was an opportunity for me to gain experience producing a weekly column before leaving the University for other pastures.

It still is.

But this week I’m going to deviate just a bit from my course, and I’m going to talk about the news rather than popular culture, and I’m going to talk about something other than medicine.

I’m going to talk about sexual assault.



If you haven’t been hiding under a rock (or buried in your textbooks), you’ve heard about the Duke University lacrosse team and the accusations of rape.

For those of you under that proverbial rock, Google is your friend. In a nutshell, the lacrosse team hired two black strippers to entertain them and their guests at a party.

The accounts of what happened next vary. One stripper claims she was dragged into a bathroom, held down by three white men and brutally raped, sodomized and strangled for 30 minutes. The team denies it.

Durham police are investigating this as a case of rape, kidnapping and a hate crime, searching the house and demanding DNA from the white players.

Protestors and the media have latched on to the hate-crime aspect of the case, focusing on the deep racial and class divide that exists between Duke and its surrounding community.

And in all the noise, the fact that someone was raped is being lost, and I don’t think this is unintentional.

We don’t like to have rape be personal. We want the victims to be hidden behind blue dots. If anyone talks about it to a paper, this one included, they opt for pseudonyms.

Is this any surprise, when we live in a society where politicians talk about “simple rape”?

I don’t control the media, and I certainly don’t control what others do. But I do control the timing of what I write, and that this is published at the start of the University of Washington’s Sexual Assault and Relationship Violence Awareness (SARVA) week is not a coincidence.

Go talk to the folks running this event, and while you’re there don’t think about numbers. Don’t think about 1 in 3, 1 in 4, 1 in 5.

Numbers are anonymous and impersonal. They don’t have faces or feelings.

Think instead about your favorite singers, professors, your sister or brother or mother, your best friend.

Think about someone you care about, and whether you want them being accused of deserving it because they dared to wear that slinky red thing.

Because they’ve had sex before; because if they’re not a Madonna, they must be a whore.

Stigma, the classic book by Erving Goffman, talks about how the stigmatized convey themselves with those who are not, have not, been stigmatized. How the stigmatized are shunned, shut out, made anonymous and encouraged to adopt what he calls an “air of good adjustment.”

“The unfairness and pain of having to carry a stigma will never be presented to” those who are not stigmatized themselves; and they “will not have to admit to themselves how limited their tactfulness and tolerance is.”

Those who view themselves as “normal,” Goffman argues, “can remain relatively uncontaminated by intimate contact with the stigmatized.”

And in writing this article, I have perpetuated the very thing that I rant against. I have kept anonymous, because I know that by admitting I was raped as a teenager means that every single person I know will look at me a little differently from now on.

But over the years, as I’ve seen cases come up again and again, I’ve begun to realize that the veil of anonymity society offers rape victims is not a shelter; it’s not a protection. It’s a way of removing the violence we don’t want to see, we don’t want to admit to.

The anonymity reinforces the stigma, and the only way that’s going to stop is if we remove the faceless numbers. If we stand up and say, “It was me.”

It was me.

The Daily: Green Pigs and Ham

Green pigs and ham
Publish Date: 2006-04-03

Although only their shells are green, the Araucana chicken has brought us green eggs for years. But until now, our ham has been a nice, hammy shade of pink.

No more — these days, even our pigs can be turned green.

While it’s not new, per se, the jellyfish pigs — so called because they have the glowing jellyfish protein inserted into their genetic material while still embryos — have been in the news again lately for two reasons.

The first is the “achievement,” announced in January by Taiwanese researchers, of the creation of jellyfish pigs that glow, inside and out. From snout to eyes to liver and heart, these oinkers are fluorescent green through and through.

The second scientific announcement came March 26, in the online edition of the journal Nature Biotechnology (the print copy will be released this month). A group of scientists from Harvard Medical School, the University of Missouri and the University of Pittsburgh Medical Center have created five tiny white piglets whose muscle tissue is “larded” with omega-3 fatty acids.

Almost anyone can tell you that omega-3 fatty acids are typically associated with fish, and believed to be “heart-healthy” — to lower cholesterol and help prevent cardiovascular disease.

While it hasn’t yet been concretely shown that these fatty acids will survive from pig to table, the hope is they will, so that a “healthy” version of bacon and other pork products can be produced.

If the genetically modified pigs do retain their omega-3 fatty acids, the researchers have plans to expand beyond pigs, creating cows who produce the fatty acids in their milk to chickens laying fatty-acid-enhanced eggs (now to simply get Araucana chickens to do this).

And why is this a good thing?

Well, as reported in The New York Times, Alexander Leaf, professor emeritus of clinical medicine at Harvard, said that genetically modified pork and other foods with omega-3 fatty acids would eventually get to the consumer, and “people can continue to eat their junk food … you won’t have to change your diet, but you will be getting what you need.”

But the problems with diet and obesity in this country will not be solved by changing the genetic content of the food we eat; as the Snackwell craze proved several years back, it doesn’t matter if food is labeled healthy, or non-fat — if you regularly eat a box of Snackwells in one sitting, you’re going to gain weight.

Likewise, changing the makeup of a pig isn’t going to mean you can suddenly eat all the bacon in the world and never gain weight or have any problems.

Regular bacon is bad to eat in massive amounts — the key is not genetically modifying pigs to produce omega-3 fatty acids. The key is learning to eat in moderation.

As Queen Latifah so eloquently said on The Daily Show last Thursday, “Don’t mess with bacon!”

If you want to eat healthy bacon, have turkey bacon.

While it is hard to argue against the lifesaving potential of some genetically modified organisms, especially those that will help relieve famine and create disease tolerant plants (and potentially animals) in Third World countries, that is not the case here.

We’re deluding ourselves if we think that the key to managing our health is in managing and modifying the genomes of the food we eat.

I do not like green pigs and ham, I do not like it, Kelly I am. I do not like them here or there, I do not like GMOs anywhere.

The Daily: Health Care ‘Miracle’

As I have mentioned, briefly, I am writing an opinion column for The Daily this quarter. It’s good experience for me; it gives me a chance to hit weekly deadlines and see immediate results for making those deadlines. It also forces me to stretch my thinking and writing, and work within word limit boundaries.

It’s also an important career move. Bioethicists commonly write for local papers, either doing op-ed’s, or running series. In fact, many of the people I’ll be working with next year have long-running series with various major newspapers around the country. One of my favourite souls, Greg Pence, who’s down at the University of Alabama, collected his newspaper opinion columns into a book recently. I believe Jon Moreno (University of Virginia) might have done similar. And of course, Art Caplan (UPenn) is one of the most prolific writers in the industry. So, this is good for me; I’m building a portfolio, and hopefully will be able to convince the campus paper folks at SUNY-A to allow me to continue the fun.

But enough digression and set-up. This is the link to my first story, which I’m also including here. In the future, I’ll publish my stories in this blog a week after they print.

Health care ‘Miracle’
Publish Date: 2006-03-28

A quarter of Americans have either no health coverage, or very lousy coverage.

For years now, doctors have complained that people without access to preventative care have been flooding emergency rooms for basic health care, clogging the system when emergent cases actually do arrive.

And what’s the solution to this growing medical crisis or low or no coverage? Why, reality television, of course.

The television station that likes to promote itself as producing reality TV with heart, ABC, has brought us a new show, Miracle Workers, which airs Monday nights at 10 p.m.

According to the show’s Web site, every week Miracle Workers features two people “who do not have the network, access to the necessary medical community or in some cases the resources” to the needed medical procedures.

So far, the show has featured surgery to restore a blind man’s sight, several spinal surgeries, electrical stimulation therapy to treat Tourette’s Syndrome, and laser-guided hip replacement surgery.

But what might be worse than what the show features is what the show implies — that the only sexy and exciting medicine is the medicine that occurs on the frontiers: that which is not available to everyone, but only those blessed with fairy godparents masquerading as ABC executives.

According to professor Rick Carlson of the UW School of Public Health, we have spent $15 trillion on health care in the last 10 years. That’s $1.5 trillion a year, still resulting in a full quarter of our population without adequate health coverage. Yet, we still have people turning to the benevolent producers at ABC in order to receive necessary medical treatment.

Of course, medicine is a business, as is television.

Obviously it was assumed these were two great ideas that would work even better together. But when medicine begins competing with television to provide medical services to people in need, the only clear conclusion we can draw is that reform is necessary.

The next time you need to see the doctor, or have some surgery or other medical procedure done, ask yourself whether or not you’re pretty, sexy, compelling or charismatic enough to be picked out of a flood of applicants to receive that necessary care. And if not, what’s your back-up plan? Are you willing to play the one-in-four odds of not getting coverage?

Carlson notes that “real reforms must ask very different questions about our values, and our goals and aspirations.”

So we need to ask ourselves: do we want medical care to continue becoming a theatre of entertainment, something you should be lucky to receive? Or do we want to step up to the plate, take that $1.5 trillion a year, and guarantee at least a basic level of care for everyone?

It’s our call – how do you feel about those odds?