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Kids of sperm donor dads ask Canadian court to stop destruction of records

Posted by Marcy Darnovsky on November 7th, 2008

The daughter of an anonymous sperm donor has filed a class action suit in British Columbia to prevent doctors from shredding medical records that contain the identity of her biological father.

Lawyers for Olivia Pratten say it's discriminatory to prevent children conceived with third-party gametes from obtaining the identities and medical histories of their biological parents. Currently, British Columbia law allows fertility doctors to destroy all information about gamete donors after six years.

The lawsuit - the first of its kind in Canada - is based on the guarantees of equality and security of the person in the Canadian Charter of Rights and Freedoms. It's been covered by most Canadian newspapers [1, 2, 3], but has gone unmentioned in the U.S.

Pratten, who is now 26 years old, commented, "Farmers have kept better records on the artificial insemination of cattle than the physicians in BC have kept on people like myself."

The Adoption Council of Canada's vice president, Wendy Rowney, argued that "every Canadian adult has the right to truthful information about his or her origins…It does not matter whether we are adopted or conceived by gamete donation; we all have the right to this information."

The UK's Human Fertility and Embryology Authority (HFEA) ruled donor anonymity impermissible in 2005. Critics of the policy claim the change has caused sperm shortages, but the HFEA says this is not the case.

Donor anonymity is the norm in the United States, but has become controversial in Canada and the UK. In recent years, "donor offspring" have begun forming organizations, setting up registries, and publicizing their case.

This has the looks of a debate coming soon to the U.S., the Wild West of reproductive technologies.

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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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