Choosing a disability for your child

The New York Times ran a provocative essay last week about people who use the latest in fertility technology, pre-implantation genetic diagnosis, to choose children that share the same disabilities as the parents– most commonly dwarfism and deafness. 

Susannah A. Baruch and colleagues at the Genetics and Public Policy Center at Johns Hopkins University
recently surveyed 190 American P.G.D. clinics, and found that 3 percent
reported having intentionally used P.G.D. ?to select an embryo for the
presence of a disability.?

In other words, some parents had the
painful and expensive fertility procedure for the express purpose of
having children with a defective gene. It turns out that some mothers
and fathers don?t view certain genetic conditions as disabilities but
as a way to enter into a rich, shared culture.

I found this especially interesting as I am somewhat familiar with PGD due to my son Alex's genetic disease, Tuberous Sclerosis Complex.  In nearly half the cases, TSC is actually an autosomal dominant disease (i.e., all it takes is one copy of the gene from either parent).  Fortunately, in our case, it appears that Alex has a random mutation and the disease does not run in the family.  I have read, however, of many parents where one of the parents has TSC and they have used or considered using PGD so that future offspring might avoid this disease.  Fortunately, we did not even have to consider going down that road.  Nonetheless, PGD, to avoid, and even choose, a disability certainly raises many thought-provoking ethical issues. 

Milk politics– even worse in Canada?

Thanks to my friend Steve S. (aka “Big Steve”) I have an international readership.  Here's what he wrote me today in response to my post about the politics of milk, “In Quebec and maybe Canada, margarine is white and cannot be yellow?to protect diary farmers from a butter substitute that looks like butter.”  Personally, I'm big on the trans fat free margarine, though I do like it to have a good bit of yellow in it.  Good thing I'm not in Canada (though I am all for socialized medicine– though I sense another email from Steve telling me I shouldn't be).

Does that diet soda taste funny?

I was sharing some soon-to-expire cans of caffeine free Diet Dr. Pepper (“what's the point?” many of my friends ask) with my friend and colleague Bill Boettcher yesterday when he expressed surprise at the looming expiration of the soda.  I explained that aspartame(aka Nutrasweet) is actually a fairly unstable molecule and thus cannot be used in baking and degrades in soda over a relatively short period of time (the expiration date for diet soda is usually just a couple months whereas it is much longer for regular soda).  “You should blog about that,” said Bill.  On a thoroughly unrelated note, I accidentally discovered a couple days ago, that a previous blog posting of mine is actually in the top ten hits when you google “Bill Boettcher.”  Before you know it, I will be the go-to website for information on Bill.  

The politics of milk

If this sounds like an odd topic, it shouldn't.  Anywhere there is financial advantage to be gained, politics is involved.  And the dairy industry, as it turns out, is one that has a long history of significant government economic intervention.  While the government seemingly started with the best of intentions– protect small family dairy farms, not surprisingly, the program has morphed into one where the rich lobbyists of the corporate dairy industry can use the power of the federal government to crush the little guy who undercuts their prices and therefore their profits.  In a nutshell:

In the summer of 2003, shoppers in Southern California began getting a break on the price of milk.

maverick dairyman named Hein Hettinga started bottling his own milk and
selling it for as much as 20 cents a gallon less than the competition,
exercising his right to work outside the rigid system that has
controlled U.S. milk production for almost 70 years. Soon the effects
were rippling through the state, helping to hold down retail prices at
supermarkets and warehouse stores.

That was when a coalition of giant milk companies and dairies, along
with their congressional allies, decided to crush Hettinga's
initiative. For three years, the milk lobby spent millions of dollars
on lobbying and campaign contributions and made deals with lawmakers,
including incoming Senate Majority Leader Harry M. Reid (D-Nev.).

March, Congress passed a law reshaping the Western milk market and
essentially ending Hettinga's experiment — all without a single
congressional hearing.

“They wanted to make sure there would be no more Heins,” said Mary Keough Ledman, a dairy economist who observed the battle.

There's also nice little graphic that goes with the article.  In summary: lobbying expenses for Big Dairy: $5.6 million; lobbying expenses for Hein Hettiga: $120,000.  I hope you are not surprised by the outcome.  Perhaps our government is not for sale to the highest bidder, but it sure looks that way.

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