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FIXED: The Science/Fiction of Human Enhancement

Posted by Jonathan Chernoguz on November 12th, 2014


Untitled Document

FIXED: The Science/Fiction of Human Enhancement, the documentary produced and directed by Regan Brashear, has recently shifted to the center of a variety of discussions and symposia on normalcy and disability. 

The University of Rochester is hosting its first-ever Disability Studies Cluster Symposium this Friday, November 14, which has been crafted and organized around the film.  The symposium is titled “Complicating Normalcy: Disability, Technology, and Society in the Twenty-First Century.” 

The film will also be screened on opening night at the Other Film Festival, the largest disability film festival in Australia, on December 3.  Additionally, the United Nations has just licensed the film for its work on the Convention for Rights of People with Disabilities.

FIXED questions commonly held beliefs about disability and normalcy by exploring technologies that promise to change our bodies and mind forever. The film follows five people with disabilities and explores the implications new human enhancing technologies have on them. 

Clark Miller, Associate Director of the Consortium for Science, Policy and Outcomes at ASU, raved about its interdisciplinary importance for students and faculty,

This film is extremely important and will be very valuable for faculty from dozens of different disciplines from the biological sciences to disability studies to the humanities and social sciences, precisely because it confronts one of the central issues of our time: how to make sense of variations among human beings and how to make sense of our capacity for radical technological innovation that will change our entire futures.

Brashear has been in touch with CGS since the beginning of production, and the documentary features CGS Executive Director Marcy Darnovsky sharing her concern about the potential misuses of new and emerging human biotechnologies. 

FIXED was screened at Future Past: Disability, Eugenics, and Brave New Worlds in 2013, a public symposium that CGS co-organized with the Paul K. Longmore Institute on Disability, Facing History and Ourselves, and Living Archives on Eugenics in Western Canada. This symposium focused on the historical and ongoing implications of eugenic ideologies and practices for people with disabilities, and FIXED synthesized many topics of the day, while providing new food for thought. 

Also in 2013, CGS hosted a Talking Biopolitics conversation with Regan Brashear, in which she discussed the reception of the film.

FIXED is a great film for promoting discussion about the profound implications of new technologies on the lives of people with – and without – disabilities. It's wonderful to see it getting so much well-deserved attention. To learn more about the film, watch the trailer, or buy a copy, see more here.

Previously on Biopolitical Times:





Patently Absurd? Or Absurdly Patentable?

Posted by Pete Shanks on November 12th, 2014


WARF logo

The US Supreme Court might agree to rule on the validity of stem-cell patents, and the Canadian courts are being asked to invalidate a patent on disease-linked genes. These suits may not succeed, but they do indicate that the legal issues around patenting human genes and tissues have not yet been resolved.

David Jensen of the California Stem Cell Report has a run-down on the stem-cell patent held by the Wisconsin Alumni Research Foundation, better known as WARF. The case has been brewing since 2006, and an appeals court ruled in favor of WARF earlier this year. Technically, the latest appeal is about standing to sue — Consumer Watchdog is the plaintiff, working with Jeanne Loring of Scripps and the Public Patent Foundation. However, the underlying question, as Michael Hiltzik pointed out in the Los Angeles Times, is: Can scientists patent life? The Supreme Court may refuse to take the case; if it does, it may make a very narrow ruling. Or, of course, not.

Meanwhile, in Canada, an Ottawa hospital is challenging patents that cover a genetic test for a heart condition. The patents involved are held by the University of Utah, Genzyme Genetics and Yale University. The Children's Hospital of Eastern Ontario (CHEO) in Ottawa reckons they can do the test for less than half the $4500 price, and besides:

"Our position is very straightforward," Alex Munter, the hospital's CEO, told a news conference. "No one should be able to patent human DNA, it would be like patenting air or water."

If the Canadian suit succeeds, it will contradict the position recently taken by the Australian Supreme Court and extend the influence of the U.S. Supreme Court's decision in the Myriad case.

Previously on Biopolitical Times:







Are All Pluripotent Stem Cells Equal?

Posted by Pete Shanks on November 12th, 2014


Research cloning of humans has always been controversial, because the technology (if ever perfected) would require women’s eggs — many, many eggs if it led to therapies — and would certainly make human reproductive cloning technically more feasible. There were therefore sighs of relief when Shinya Yamanaka discovered how to reprogram readily available somatic cells to become pluripotent, for which he won a Nobel Prize.

Induced pluripotent stem cells (iPSCs) were such an exciting development that many people thought that there was no longer any point in pursuing research cloning, or generating pluripotent embryonic stem cells via nuclear transfer (NT-ESCs). After all, it hadn’t been done after years of trying. But not everyone agreed.

Last year, a team at Oregon State led by Shoukhrat Mitalipov did report success in generating NT-ESCs, and in 2014 two other teams duplicated the result: one led by Dieter Egli’s team at the New York Stem Cell Foundation, the other a collaboration between the Korean Cha Institute and Advanced Cell Technology.

The stakes were raised further when a consortium (including Mitalipov’s team) published a paper in Nature in July that claimed that NT-ESCs were clearly better than iPSCs. Comparing both with stem cells derived from standard IVF embryos, this paper asserted that the iPSCs had flaws, whereas:

human somatic cells can be faithfully reprogrammed to pluripotency by SCNT [somatic cell nuclear transfer] and are therefore ideal for cell replacement therapies.

Not so fast.

A new study led by Dieter Egli’s team (but again including Mitalipov) was just published in Cellcomparing NT-ESCs and iPSCs:

The two cell types showed similar genome-wide gene expression and DNA methylation profiles. … The occurrence of these genetic and epigenetic defects in both NT-ESCs and iPSCs suggests that they are inherent to reprogramming, regardless of derivation approach.

This is particularly noteworthy, coming as it does from people who have been promoting and working on SCNT for many years.

For more detailed analysis, see the Stem Cell Blog of UC Davis professor Paul Knoepfler. He makes the strong point that, given the ethical and practical problems with cloning, NT-ESCs really would have to be significantly better than iPSCs to be worth pursuing — and the new research suggests that they are not.

Nevertheless, all the scientists involved advocate pursuing all lines of research, specifically including nuclear transfer, even though they oppose using it for human reproduction. Which provides further support for the longstanding argument that, at a minimum, the United States needs a firm, specific, national law banning human reproductive cloning.

Previously on Biopolitical Times:





Open-Source DNA

Posted by Jessica Cussins on October 31st, 2014


Prometheus Brings Fire by Heinrich Friedrich Füger

Untitled Document

About a year ago, Steven Brenner posed this question in Nature,

How long will it be until an idealistic and technically literate researcher deliberately releases genome and trait information publicly in the name of open science?

We now seem to be well on our way.

For just $5 and your acknowledgement of the fact that DNA variations offer limited information (so you really ought to discuss the findings with a doctor or genetic counselor), an online venture called Promethease will provide you with the full explanation of your 23andMe health data in just 15 minutes, FDA be damned.

Promethease acknowledges that “For now, consumers have to fend for themselves in a thicket of scientific information—and make their own decisions about risks.” Apparently, people are happy to do so; the site averages 50-500 reports each day. But the trend to gain access to genetic data isn’t merely coming from “consumers” curious about their own data; it’s also coming from researchers and companies looking to greatly expand their databases to find statistically relevant genetic variants.

Many trait-affecting alleles can only be identified by analyzing huge amounts of data, because each one has a tiny effect. For instance, some 697 variants have been identified that are linked to height, but they are only thought to represent an estimated "16% of the genetic contributors to height.” Other researchers are trying to find genes affecting intelligence (one-twentieth the influence found with height), as well as rare mutations leading to or preventing diseases (hopefully to fare better.)

For example, the Haplotype Reference Consortium was unveiled in San Diego last week at the annual meeting of the American Society of Human Genetics. The consortium includes data collected by 23 other research collaborations and has identified 50 million genetic variants in two years.

While anyone can make use of their haplotype reference panel to expand upon their own data, the Exome Aggregation Consortium, unveiled on the same day, goes even further. This resource has made the entire exome sequencing data of 61,486 unrelated individuals, from “a variety of large-scale sequencing projects,” available to anyone “for the benefit of the wider biomedical community.”

Harvard biologist and prolific blogger Daniel MacArthur’s tweet about the announcement received over 100 “retweets” and was “favorited” nearly as many times. In the comments, people referred to the consortium as a “beautiful resource” that is “simply a game changer.”

Another effort, the Personal Genome Project (PGP) has been leading the charge to develop an open source database of genetic information for years, though their model is on the far end of the spectrum. Every participant not only volunteers their genetic data to the entire world, but their date of birth, gender, weight, height, blood type, race, list of health conditions, medications, allergies, zip code, other family members enrolled, answers to surveys, and even whether they can carry a tune. The fact that one’s full name is omitted is really only a formality, since anyone who wanted to know could easily find it out.

Another critical player in this trend is the Global Alliance. In just over a year, the alliance has expanded to include more than 170 organizational members in a “public-private partnership” representing over 25 nations. Their stated goal is to “unlock the great potential of genomic data,” by sharing all of their data and making “comparisons across millions of human genome sequences.”

Importantly, the trend to “free the data” is a significant antidote to Myriad’s “trade secrets,” but huge challenges remain.

The Personal Genome Project does a pretty good job of outlining the risks involved with sharing your genetic data with the world in its consent form. These include the acknowledgement that you are foregoing privacy, and the acceptance that this means your data could be used as a barrier for you or your family to obtain employment, insurance or financial services; to implicate you or your family in criminal activity; or even to make synthetic DNA based on your genome and plant it at a crime scene to frame you or your family.

But while those who send their sequence to the PGP explicitly consent to these risks, the merging of research databases presents a critically different reality. According to New York Times writer Gina Kolata, “There are no common procedures for assuring that patients consent to sharing their information.” The initiatives have simply moved forward anyway. While some people are pleased to share all of their personal and health information, obviously not everyone is privileged enough to afford that luxury.

Furthermore, with all the talk about “the greater good,” it can be easy to overlook the fact that this information is poised to become really big business. When all of these noble efforts to promote open-access lead to the creation of drugs, tests, and treatments – these findings will be patented, and the wealth that flows from them is unlikely to be quite so “open.”

Previously on Biopolitical Times:






 


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