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Sarah Palin, Down syndrome, and the abortion debate

Posted by Marcy Darnovsky on November 7th, 2008

Here’s something for which we may want to thank Sarah Palin: sparking fruitful new contributions to the difficult discussions between advocates of reproductive rights and disability rights.

Many disability rights advocates are pro-choice, but horrified at the almost automatic choices so often made to terminate a pregnancy when a fetus with Down syndrome is identified. Many reproductive rights advocates consider themselves supporters of people with disabilities, but are reluctant to open the door to any questions about women’s motives for abortion.

But two commentaries published this week, both by women whose children have Down syndrome, paint the picture differently. In the Washington Post, Tierney Temple Fairchild, a Charlottesville education and management consultant, writes:

I had a choice, and I chose life. Does that make me pro-choice or pro-life? Our political parties tell us we can't have it both ways….Ten years ago, I made a decision to continue a pregnancy that would lead to a child born with Down syndrome….Ten years after my own choice, I find it disheartening that termination statistics may remain the same, that so many potential mothers choose not to follow Sarah Palin’s example.
And in the Canadian Medical Association Journal, an essay by Renate Lindeman, a spokesperson for Down Syndrome Belongs in Nova Scotia, opens “Take Down syndrome out of the abortion debate” with this:

Trig Palin, the 5-month-old son of vice presidential candidate Sarah Palin, has drawn enormous public notice to Down syndrome. For that, many in the US and Canadian Down syndrome communities are grateful.
But as the mother of 2 children with Down syndrome, it makes me very nervous. I'm not willing to see my kids used as poster children for the anti-abortion movement.

Rather, I see the attention that Sarah and Trig Palin are bringing Down syndrome as an opportunity to take the issue of prenatal screening out of the abortion debate once and for all.

Keep your eye on the stem cell ball, Part 2

Posted by Jesse Reynolds on November 6th, 2008

Sharon Begley of Newsweek has written another excellent blog post, this one on why stem cells are unlikely to produce a treatment for Parkinson's disease, specifically, and neurological diseases, in general. It's not just that the patient-specific cells produced by new reprogramming methods (or the earlier proposed cloning-based method of SCNT) would carry the same genetic defects as the patient: "Transplanting them into the women would be like putting a cirrhotic liver into an alcoholic whose own liver was kaput," writes Begley.

The other problem is that brain is very, very complex. In the case of Parkinson's, says neurobiologist Jeffrey Kordower of Rush University, until scientists better understand the causes of the uncontrollable movements of its victims, then "No one should do clinical trials with stem cells." In fact, he's quite pessimistic: "In my opinion it will take a major miracle for stem cells to make a difference in Parkinson's disease."

Fortunately, there is progress in neurological diseases with stem cells. But instead of steps towards cellular therapy, stem cells are being used to test drugs. This leads me to make an early prediction for 2009: With the end of stem cell research as a political vehicle, its advocates are likely to temper expectations. They'll not just move out the goalposts on the timeline towards treatments, but the touted uses of stem cells will shift from potential cellular therapies to models of human diseases in Petri dishes and better drug testing methods. These new purposes will win fewer votes than "your own personal biological repair kit," but they are also much more realistic.

Previously on Biopolitical Times:

RIP: Stem Cells in Politics (2002-2008)

Posted by Jesse Reynolds on November 5th, 2008

The stem cell research initiative in Michigan passed yesterday by a 52 to 48 margin. Like 2006's initiative in Missouri, which passed with a similar percentage, its policy impact is much less than its proponents stated. Conducting research using embryonic stem cell lines has been permitted in Michigan all along. Now the state's scientists can derive lines themselves, which was previously prohibited.

This reality plays out in two contrasting quotes. The head of University of Michigan Center for Stem Cell Biology, Sean Morrison, said of the result, "We expect in the short-term millions of new dollars of grants to come from the federal government and private foundations to support the expanded research." In contrast, business columnist Nathan Bomey says supporters "are certain to be confronted soon with the stark reality of Michigan's crumbling state budget and bleak economic situation. Sure, embryonic stem cell research is now legal, but who will fund it? Not the state."

Despite Morrison's claims, there will be no increased federal funding due to the passage of Michigan's stem cell proposal. Even when President-elect Obama removes the Bush restrictions, federal funds will be available only to work with embryonic stem cell lines, not to create new ones. Grants for the latter are restricted by the Dickey-Wicker amendment, which would be left in place by both the repeatedly-vetoed stem cell bill and Obama's platform.

But the real message from this election cycle is the end of embryonic stem cell research as a relevant political issue. It was huge in 2004, present but marginal in 2006, and seemed comatose with the 2007's failure of New Jersey's stem cell funding initiative. In this cycle, the topic made barely a peep.

Hopefully now work can proceed in concert with a level-headed conversation about the true potential of stem cell research and the real challenges posed by human reproductive and genetic biotechnologies.

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All the President’s Genes?

Posted by Pete Shanks on November 5th, 2008

The election of the 44th President of the United States is clearly an important moment in the evolution of the nation's attitude to skin color. However, just as we begin to discount the importance of certain superficial aspects of phenotype in the selection of candidates, some are proposing that we begin to judge them by genotype – even though we are a long way from being able to interpret "the possibilities revealed in their genes" with any confidence at all.

The Wall Street Journal recently examined the prospect of using personal genomics to evaluate the potential abilities of politicians. The Personal Genome Project’s George Church - who believes that in the age of genomic sequencing, the notion of privacy is something we should leave behind - claims: "It is not like we are collecting horoscope data or tea-leaf data. These are real facts, just as real as bank accounts and the influence of political action committees or family members."

But the interpretation of facts is far more critical than the facts themselves. Heck, even the arrangement of tea leaves is not exactly factual! What any particular collection of alleles mean is a very difficult question – so difficult that the Departments of Health in California and New York have complained about direct-to-consumer genetic tests precisely because consumers do not have the expertise needed to evaluate the data.

So how would we ever interpret a candidate’s gene scan? More than that, how would we make political judgments even if the genomic facts were more or less clear? President Lincoln may have had "the genetic condition Marfan Syndrome," which could perhaps have been predicted from a genome scan. Would we have been better off disqualifying him? Would the nation even exist if we had?

Certain medical conditions are important for the public to know – but even then, the case of FDR muddies the matter, does it not? Balancing the possibilities revealed by genomics – and statistical possibilities are all we are apt to find – is unlikely to be the best way to select a President. What is the gene for temperament? What is the gene for intelligence? There isn't such a “fact,” we all know that.

And sometimes what the genomic data suggest is just flat wrong. The same Wall Street Journal article cites an anemic woman who was surprised to discover that "she carried a gene for hemochromatosis, in which abnormally high levels of iron build up in the blood." Who you going to believe - the DNA print-out or your lying blood?

Too bad the newly minted Genetic Non-Discrimination Act doesn’t apply to voting.

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