FIXED: The Science/Fiction of Human Enhancement

Regan Brashear (Producer/Director), Fernanda Castelo (Ekso Test Pilot) and Jamie LeJeune (Cinematographer) after a day on the water with the Bay Area Association of Disabled Sailors

It has certainly been an exciting fall for the world and for Fixed. After the exhilarating success of our Kickstarter campaign, we set to work on the next stages of the film.  We interviewed Milton Reynolds of Facing History and Ourselves, about the history of the U.S. eugenic movement, and Sujatha Jesudason with Generations Ahead about prenatal screening technologies, sex selection and disability deselection, and filmed performance artist, writer and English and Disability Studies scholar Dominika Bednarska about how ableism is reproduced in society.  We also filmed a classroom debating the social value of prenatal screening technologies at the Lick-Wilmerding High School in San Francisco; at the Abilities Expo in San Jose; and most recently with Fernanda Castelo, a test pilot for Ekso Bionics‘ exoskeleton. Fernanda even got us out on the water a few weeks ago to film with the Bay Area Association for Disabled Sailors (BAADS). Quite a blast!

   

Crew news: Two terrific new production assistants came on board for the fall. Karla Claudio Betancourt and Jackie Grieff have contributed their skills and enthusiasm to the project in a variety of ways from assisting with the last production shoots, designing the new Fixed t-shirt, poster, and button, to transcribing hours of new footage. Many thanks to you both for your hard work!

I also want to welcome back editor-extraordinaire Josh Peterson who edited the Fixed trailer last year and will now be helping me bring the rough cut and all of this great new footage together to craft the final film. Josh has been cutting documentaries for almost twenty years. He was nominated for a national Emmy for Outstanding Achievement in Editing in 2009 for his work on Soldiers of Conscience. He also edited The Rape of Europa, which was nominated for an Emmy for Best Historical Programming and short-listed for a Best Documentary Academy Award. I’m very honored to work with Josh again. Be sure to check out his latest film, Blood Makes the Green Grass Grow, just released this fall.

Next steps: Fixed will be released this spring. We are wrapping up the last round of filming and will begin editing on January 23rd and then the final steps of post-production. In the meanwhile, please feel free to contact us with any questions or comments. Follow Fixed news by joining our Facebook page and our e-newsletter.

A few Fixed fans after receiving their Kickstarter rewards in the mail

A note to our Kickstarter supporters Posters and t-shirts were sent out last week. Please let us know if you still need to provide us with your mailing address.  Digital downloads will be sent electronically after the film is completed. DVDs and the “Professor Xavier Neural Enhancement” package (coffee, mug & DVD) will be sent approximately 1-2 months after the film is finished as we complete the special features. The teaching curriculum and companion DVD will take a few more months to complete after this. Thanks for your patience and for supporting Fixed! We couldn’t make this film without YOU!

If you missed the Kickstarter campaign, we could certainly still use your support with the final stages of post-production.  Please consider making a tax-deductible donation. You can also order your own Fixed t-shirts, posters, and buttons, or pre-order DVDs here too!

Wishing you all the best. We look forward to sharing Fixed with you in 2012!

Warmly,

Regan Brashear, Producer/Director

Filming a prenatal screening debate at Lick-Wilmerding High School, San Francisco, Oct 2011

Jamie LeJeune, cinematographer & Making Change Media collective partner

At 1:12pm on Friday, August 26th, our 310th backer, Peter Brieger, brought us past the $25K mark! WE DID IT!

Our deepest, most heartfelt thanks to every one of you. We are overwhelmed by the tremendous outpouring of support. When we started this campaign, we didn’t know if we would make it. We believed in the importance of this film but weren’t sure enough other people would agree with us. Yet 300+ people came together to say, yes, we need more conversation about the ethical, social and philosophical issues surrounding human enhancement technologies, differing perceptions of disability, and what it means to be human.

Just yesterday the BBC and NPR ran stories about Oscar Pistorius and his journey to athletic stardom—but not without a swirl of controversy. Does the double amputee have an advantage or doesn’t he? What do we really mean by disability? Is his story following the old “super crip” narrative, or is he part of a movement that’s redefining what’s “normal”?

These are the kinds of questions Fixed addresses, and while our goal of $25k will go a long way toward finishing the film, there’s still 4 days to make more magic happen.

What other wizardry is there? In our push to expand the conversation, we want to develop curriculum to reach students at the high school and college levels, as well as in medical schools and bioethics programs. The added dollars will allow us to devote more resources towards that goal.

If you haven’t yet contributed, donations can be made right up to the cutoff time of 9 a.m. on Wednesday, August 31. And, please, let’s make the most of these last few days by continuing to spread the word!

Thank you again. We are ecstatic!

With love and gratitude,

Regan & Team FIXED

PS: Here’s a message from core team members: Regan Brashear, Cielo Lutino, Dave Graham-Squire & Jessica Fuh

Dear friends of Fixed,

Today marks a huge milestone: we hit 10K on Kickstarter! In fact, as of writing this, 111 backers have collectively raised $10,380! We are 41% of the way there, folks. Do you know just how much you all ROCK my world?!

I cannot thank you enough, but, instead, I will try to do my best to keep you better informed about Fixed as we move forward.

To this end, Fixed has entered the Tweeting world today and has a brand spankin’ new Twitter account: www.twitter.com/FixedDoc

If you are on Twitter (and it seems I am one of the few who hasn’t been in the Twittersphere much thus far so you are probably there), please follow me and I’ll follow you, too. Okay, see, that just sounds creepy. But you know what I mean. I want to follow what you’re thinking about, what cool links you discover, what you’re up to, etc… So please, tweet tweet!

155 of you have already discovered the FIXED Facebook page @ http://www.facebook.com/FIXED.the.movie  Good on you! Now where are the rest of you? Please come visit, join the page by clicking “like”, comment on the stories you’ll find there and post away about your own work, thoughts or related discoveries. I mean, seriously, every day there are more and more stories in the news about new technologies and new artistic movements challenging how we think about disability and the body, sometimes in oppositional and deliciously complicated ways.

How about this for an incentive? I will send a free Fixed poster to the next 30 people who become both a FixedDoc Twitter pal *and* who “like” the  FIXED Facebook page. (Full disclosure: posters won’t be ready for mailing until October, but they will be very cool!)

Okay, and now a promise. Well, first, some background…so this Kickstarter campaign has been one seriously exciting, nail-biting, nerve-wracking and wonderful adventure from day one. I have been so honored, and humbled, to meet so many new friends and fellow travelers through doing this campaign these last few weeks – and to have so many of my friends and family members dive in to help this campaign succeed (I want to devote another update just to singing their praises!).

As my friends on Facebook will tell you, I have not held back at sharing the excitement of this journey with everyone on Facebook, often… Yes, I’m afraid this Kickstarter campaign has made me one of those annoying posters who can’t stop talking about their project on Facebook (um, and everywhere else, for that matter), posting hourly updates on what percentage we’ve reached, how many backers we have, etc., because it is seriously exciting to see your dream get one step closer every day. And seriously touching to see so many people come out of the woodwork to help make it happen. So I shared one day on Facebook that with every email of support or pledge to the project, I was moved to shed a happy tear or do a little happy dance, and sometimes both… and a friend dared me to film it and post it. Then other friends started demanding to see the happy dance. So here’s the promise: I’ll spare you the happy tears, but when we hit 20K (5K short of our final goal) I promise to film and post my happy dance, so hopefully you will share in the excitement with me. And heck, maybe post your own happy dances too! And hopefully that last 5K will just come boogying in the door to join the party.

As always, please feel free to reach me at info@fixedthemovie.com. And please tweet and Facebook and dance about Fixed to your whole community! We have another 15K to raise before this party is over!

With a heartfelt thanks,

Regan

At 9am, Monday, July 25th, we launched the FINISH FIXED KICKSTARTER campaign with a goal to raise the $25K that’s needed to finish the film in 37 days! Kickstarter is an all-or-nothing platform. If we don’t reach our goal or surpass it by August 30th, then we won’t receive any of the money pledged.

It is now 5 days into the campaign and thanks to the generous donations of our first 38 backers, we have raised $4,486! That’s 17% of the way to our goal. We have 32 days left to raise the remaining 83%. We know we can reach this goal but not without your help.

If all of you wonderful FIXED fans out there made a donation today and then ask 10 of your friends or colleagues to match your contribution, we would reach our goal and FIXED would be on its way to the finish line in no time. No donation is too small. Every dollar counts!

So be sure to check out the Kickstarter page today by clicking on the icon above. You can learn more about the campaign, see a short video clip with the director, and check out all the great rewards you will receive for making a donation! Please spread the word!

http://kck.st/fixedthemovie

The FIXED team has been working around the clock getting ready to both launch our Kickstarter fundraising campaign later this week and to head off to the Big Apple, or just north of the Big Apple rather to Tarrytown, NY, for a three day conference, hosted by the Center for Genetics and Society. The Tarrytown Meeting is a gathering of scholars, activists and media makers from all over the country and beyond, focused on the social implications of human biotechnologies. We will be holding two rough cut screenings at the conference, as well as being a part of the Biopolitical Cultural Festival.

Here’s a link to a video from last year’s conference and more information:

Tarrytown Meeting 2010

“From July 27-29, CGS hosted the inaugural Tarrytown Meeting, the first of three planned annual events. More than 100 invited advocates, scholars and others gathered over three days to consider what can be done to ensure that human biotechnologies support rather than undermine social justice, human rights, ecological integrity and the common good. The Tarrytown Meetings, and the network of individuals and organizations participating in them, grew out of a series of strategy consultations with colleagues and allies. ”

In other news, we will be kicking off our Kickstarter campaign later this week! Stay tuned for more updates!

Breast Cancer Gene Case Has Another Day in Court
by Eric Hoffman and Jaydee Hanson, Biopolitical Times guest contributors
April 7th, 2011

A three-judge federal appeals court heard arguments on Monday in a case that could decide the future of human gene patents. The high-profile lawsuit was filed by the American Civil Liberties Union and the Public Patent Foundation on behalf of a number of researchers, patients, women’s health organizations and scientific organizations against Myriad Genetics and the University of Utah Research Foundation, holders of patents on genes known as BRCA1 and BRCA2 that are associated with elevated risk of breast cancer. The plaintiffs argue that the US Patent and Trade Office erred in granting these patents because genes are products of nature, not human inventions.

The panel heard Myriad’s appeal of a decision strongly favoring the plaintiffs that was issued in March 2010 by Federal District Court Judge Robert Sweet. Whatever is decided by the appeals court, many observers expect the case to continue on to the Supreme Court.

A few things stood out in Monday’s hearing. First, the judges were very interested in whether all the plaintiffs actually have standing in the case – that is, in whether they have actually been harmed by Myriad’s control of the genes. For example, University of Pennsylvania researchers whom Myriad stopped from conducting BRCA1/2 testing are now saying that if the patents on those genes are ruled invalid, they are unsure whether they will continue to screen for them. The judges focused on this account to the exclusion of statements filed by more than 150 other labs attesting to work that had been halted by the Myriad patents or by “cease and desist” letters from the company. The ACLU argued that University of Pennsylvania will, of course, screen for those two genes since their molecular pathologists screen for almost every other medically relevant gene on a daily basis. They asserted that these researchers’ reluctance to say so outright is due to past threats by Myriad.

If the appeals court judges wish to sidestep this high-profile and high-stakes case, they might use the question of standing to avoid making a decision. But that kind of dodge would likely make it seem that the Justices were unsympathetic to persons with breast cancer and other diseases that are correlated to particular genes. This could help get more Members of Congress interested in fixing the gene patenting problem—something they have left up to the courts until now.

A second notable aspect of Monday’s hearing was the extent to which the U.S. Solicitor General supported the plaintiffs’ key argument that genes are not patentable. This was in keeping with the Department of Justice’s surprise move last fall when it filed a “friend of the court” brief in support of the lawsuit against Myriad. Unfortunately, the DOJ and the Solicitor General are saying that while genes cannot be patented, copies derived from them, known as cDNA (copy DNA), can be. While creating cDNA is technically complex, for explanatory purposes, this is equivalent to saying that while one cannot patent a Picasso painting itself, patenting and selling a photocopy of the original is completely permissible. While we disagree with the DOJ’s conclusion on cDNA, it was a big plus to have them arguing largely on the side of plaintiffs in the appeals court hearing. A major aspect of the DoJ’s motivation in this case is to assure that patents on isolated genes do not prevent medical gene testing, including whole genome sequencing for multiple diseases, from proceeding.

Perhaps the most striking moment of the day, however, came when Myriad’s lawyer unaccountably admitted that under the company’s legal theory, elements of the periodic table are in fact eligible for patents. Pressing the logic of this claim, the Solicitor General pointed out that lithium, a naturally occurring element that does not exist in isolated form in nature, was first isolated by a chemist in 1818, but that no one has ever claimed it is patentable. In response to questioning by the judges, Myriad’s lawyer said pretty much outright that yes, he does believe that isolated lithium is patentable material. In his defense, he did note that he was an English major, not a scientist.

Barely addressed in the hearing was the important issue of DNA as carrier of information, despite the fact that Judge Sweet relied heavily on this idea in his reasoning about why DNA is different from other material compositions. In his ruling for the District Court, Sweet wrote:

The information encoded in DNA is not information about its own molecular structure incidental to its biological function, as is the case with adrenaline or other chemicals found in the body…this informational quality (of DNA) is unique among the chemical compounds found in our bodies, and it would be erroneous to view DNA as ‘no different’ than other chemicals previously the subject of patents….DNA, in particular the ordering of its nucleotides, therefore serves as the physical embodiment of laws of nature – those that define the construction of the human body…the preservation of this defining characteristic of DNA in its native and isolated forms mandates the conclusion that the challenged composition claims are to unpatentable products of nature.

Hopefully, the appeals court will consider this crucial piece of the puzzle when making its decision, since failing to do so will favor Myriad over the plantiffs. But expectations are not high, since this appeals court has in the past routinely upheld the views of patent holders. How broadly it rules and what deference it gives to the Justice Department’s views will affect how and whether the case is accepted for a hearing at the Supreme Court.

Regardless of the outcomes in this case, it is likely that a true fix to the problem will only come if Congress steps in and declares naturally occurring DNA sequences as outside the scope of patentability. A similar statement was made by one of the judges on the panel for very different reasons, when he said that a ruling in the Myriad case could have “dramatic” consequences for the biotechnology industry and that the issue may be more appropriately addressed by Congress. It is time for Congress to reintroduce and pass the currently stalled “Genomic Research and Accessibility Act,” which would ban the patenting of genes and naturally occurring DNA sequences.

Eric Hoffman is Biotechnology Policy Campaigner at Friends of the Earth. Jaydee Hanson is Policy Director for Human Genetics at the International Center for Technology Assessment.

Now you can follow FIXED on Facebook!
http://www.facebook.com/FIXED.the.movie
We will be posting outtakes from the film here occasionally as well as updates on the film’s progress. Find out the latest about the FIXED cast and crew and discover new resources on human enhancement technologies and disability studies! Be sure to “like” the page to stay connected and “share” with your friends.