A voice for Annie and children with trisomy

Barbara Farlow has emailed to inform us about a recent publication in Pediatrics which gives a voice to parents and their children, like Annie, who have trisomy 13/18. Here are a few related links:

The news release from the University of Montreal: http://www.nouvelles.umontreal.ca/udem-news/news/20120723-children-with-trisomy-13-and-18-and-their-families-are-happy.html
Journal Abstract: http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.abstract

Canadian Press Article (Helen Branswell): http://www.globalnews.ca/canada/health/parents+of+babies+born+with+disabling+anomalies+report+they+enrich+families/6442684259/story.html 

Reuters: http://www.reuters.com/article/2012/07/23/us-parents-doctors-kids-clash-idUSBRE86M02O20120723

And a few videos about children with trisomy:

Mieko: http://www.youtube.com/watch?v=cteTcuI-xYI
99 Balloons:http://www.youtube.com/watch?v=th6Njr-qkq0

Rick Santorum and prenatal screening

For those that missed the controversy, towards the end of February Rick Santorum (current candidate for the Republican presidential leadership bid) argued that,  ” a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.” His argument was roughly as follows: since prenatal screening leads to an increase in abortions, and since abortion is morally reprehensible, the morality of prenatal screening should also be considered. He was also, however, making the point that prenatal screening leads to a new form of eugenics — one that targets a fetus which exhibits abnormalities and deformities which are deemed undesirable. These arguments set off a firestorm of controversy.

Emily Rapp wrote a reply, “Rick Santorum, Meet my Son”, in which she claims that if she had determined that her son would have been born with Tay-Sachs (as he was), that she would have chose to abort her fetus.

 If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision.

But it seems like both sides are talking passed each-other a bit here. It seems necessary to recognize the potential dangers for a form of newgenics — something that can be informed by our understanding of the history of eugenics, and the ways in which new technologies can reassert these tendencies. But it also seems necessary to recognize the potential value of pre-natal screening technologies, and to recognize the very real pain that diseases like Tay-Sachs impart on the child.

Chromosome 18 Registry & Research Society

Thanks to Velvet Martin who has informed us of Chromosome 18, an organization dedicated to the advocacy of individuals with chromosome 18 abnormalities in an effort to help them “overcome the obstacles they face so they might lead happy, healthy and productive lives.”

More information on the organization can be found at their website. And here’s a video introducing the registry.

Perilous Relations: Bioaesthetics and Eugenics

Some might be interested in a conference session being held in Sydney, Australia this year titled Perlous Relations: Bioaesthetics and Eugenics. The session, which takes place July 12-14, will be part of the Together<>Apart conference—a conference which focuses “on the very broad idea of relations and relationships as well as allied terms such as collaborations, networks and partnerships.”

More about the conference can be found here.

And the abstract for the Perilous Relations session can be found after the break.  Continue reading

A reply to Allen Buchanan on Cognitive Enhancement

The interview with Allen Buchanan has spawned numerous discussions throughout the web, including Brendan Foht’s response. In it, Foht looks to address Buchanan’s claim that the nature of our evolution in some sense justifies cognitive enhancement, and the existence of other technologies.

It is strange that Buchanan thinks that opponents of genetic engineering who find something worth preserving in our nature must believe that evolution is analogous to some sort of “master engineer.” Considering that evolution is a slow process by which biological order spontaneously emerges from highly complex networks of highly conserved genes, there would seem to be an obvious analogy for it in the conservative view of society.

Another article on the topic by Allen Buchanan can be found here. And you can watch a lecture by Buchanan through Youtube, titled “Using Biotechnology to enhance normal humans: Why nature isn’t good enough.” 

“Finding Purpose After Living With Delusion”

An article from the New York Times tells the story of Milt Greek, who experiences psychotic delusions to save the world.

So after cleaning the yard around his house — a big job, a gift to his wife — in the coming days he sat down and wrote a letter to the editor of the local newspaper, supporting a noise-pollution ordinance.

Small things, maybe, but Mr. Greek has learned to live with his diagnosis in part by understanding and acting on its underlying messages, and along the way has built something exceptional: a full life, complete with a family and a career.

Greek, and a growing number of others, have looked to their delusions as being rooted in fears, and other psychological wounds, with the goal of recovery through understanding. It’s a process that Continue reading

“Why Cognitive Enhancement is in Your Future (and Your Past)”

For those interested in transhumanism, cognitive enhancement, and the potential ethical problems that follow, this interview with Duke Philosophy Professor Allen Buchanan might be of interest. Buchanan has written extensively on the ethical implications of human enhancement, notably in his book Better than Human, and has argued forcefully in favour of pursuing cognitive enhancements.

Buchanan disagrees with critics who suggest that cognitive enhancement should not be pursued, in part, because it’s antithetical to human nature. In fact, he argues that the desire to improve our capacities, and our ability to do so, constitutes an important part of our nature.

I think that any appeal to the notion of human nature, on either side of the enhancement debate, is tricky and problematic and has to be handled with care. Yes, in one sense we might say that it’s part of human nature to strive to improve our capacities. Humans have done this in the past by developing literacy and numeracy, and the institutions of science, and more recently we’ve done it with computers and the Internet. So, yes, if an alien were looking at humanity and asking “What is human nature?” one of the ingredients is going to be that these beings seem quite concerned with improving their capacities and they seem to have a knack for doing it.

Check out the complete, and lengthy, interview for more discussions on this topic, the films Gattaca and Limitless, the potential to exacerbate social inequalities, and other ethical debates surrounding cognitive enhancement.