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Making Sense of the BRAIN

Posted by Jessica Cussins on July 24th, 2014


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More than a decade after the historic completion of the Human Genome Project, the ethical, legal and social issues (ELSI) are far from being sorted out. The role of genetic information in the courtroom, in research projects, in for-profit companies, at all stages of pregnancies, and in insurance companies is being negotiated across multiple planes on a daily basis. With so many competing interests, reaching consensus on responsible usage can feel like a pipe dream. Nonetheless, important strides have been made in several of these areas through recommendations, regulations, and tireless advocacy.

Are there lessons to be learned from these struggles that might help ease the growing pains of the upcoming projects to understand the brain?

The brain projects are certainly shaping up to be no less momentous or controversial.  According to the 1.2 billion pound, ten-year undertaking in Europe known as the Human Brain Project,

Understanding the human brain is one of the greatest challenges facing 21st century science. If we can rise to the challenge, we can gain profound insights into what makes us human, develop new treatments for brain disease and build revolutionary new computing technologies.

The BRAIN Initiative in the United States (called the cousin of Europe’s Human Brain Project) is no less ambitious. It is set to receive $4.5 billion in federal funding over the next 12 years.

These projects will help make sense of what is probably the least understood part of the human body. The origins of our thoughts, memories, desires, actions, and emotions could become less elusive and provide important keys for helping people deal with neurological disorders.

But already at this early stage, extensive criticisms have been voiced. Most strikingly, the conceptual starting place of even being able to successfully map the brain in an intelligible way has been questioned. New York University research psychologist Gary Marcus recently pointed out in a New York Times op-ed that we don’t even know what a good theory of the brain would look like because “[b]iology isn’t elegant the way physics appears to be.” He continued,

We know that there must be some lawful relation between assemblies of neurons and the elements of thought, but we are currently at a loss to describe those laws... The problem with both of the big brain projects is that too few of the hundreds of millions of dollars being spent are devoted to spanning this conceptual chasm.

Additionally, the methodology and reach of the projects have been criticized. There are now over 700 signatories to an open letter to the European Commission from the European neuroscience community. The letter states that the signing parties will boycott the Human Brain Project unless it is amended to be more open, inclusive and flexible.

There are also huge ethical concerns that need to be addressed more comprehensively in both projects. Nature called them “a laundry list of ethical issues,” including “the responsible use of cognitive-enhancement devices, the protection of personal neural data, the prediction of untreatable neurodegenerative diseases and the assessment of criminal responsibility through brain scanning.”

Another risk worth noting is how the influx of resources and excitement for a single element of human biology can overshadow other important factors and encourage biological determinism, even when such a focus is inappropriate or even harmful. Chipping away at the genetic determinism caused by the HGP has been a challenge. In these brain projects, we have an opportunity to learn from such experiences and not start completely from scratch.  Otherwise, in five years time, the “gene of the week” phenomenon could simply become the “neuron of the week.”

Other relevant lessons to remember include appropriate boundaries surrounding patents on the human body, the failures of privacy protection, harm of misinformation in unregulated direct-to-consumer models, the problem with trying to modify things we don’t yet understand, and discrimination against certain kinds of bodies. We really don’t need any more examples of how the “science of the day” can be used to justify harming or devaluing certain groups of people.

Opening up our brains for examination is going to stir up not only these issues, but also completely novel ones. We need to learn from past mistakes and be ready to deal with new issues as they arise. For now, it is heartening to see the amount of discussion taking place around the world about these complexities. Hopefully those at the forefront will not merely be defensive about their “grand vision,” but also realize that incorporating both scientific and social complexity in at the early stages is the best route forward for everyone.

Previously on Biopolitical Times:





Failures and Risks in Biosafety Regulation

Posted by Pete Shanks on July 24th, 2014


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The Centers for Disease Control and Prevention (CDC) suffered real embarrassment the other week, and we are all very fortunate that the consequences were not worse. Dozens of employees "were potentially exposed to deadly anthrax spores" (though no one got sick) and a lethal strain of flu virus accidentally contaminated a much milder sample that was distributed to a Department of Agriculture labMeanwhile, six 60-year-old vials of smallpox virus were found in an old refrigerator at NIH, two of which contained live specimens.

As Laurie Garrett eloquently put it: Oops. Her must-read piece in Foreign Policy was titled:

It’s 10 o'Clock — Do You Know Where Your Bubonic Plague Is?
Spilled smallpox, missing SARS, and rogue scientists with mutant H1N1. If you’re not scared, you should be.

The "missing SARS" refers to an incident in France last year; not CDC, but certainly fitting the pattern. The agency’s head, Thomas R. Frieden, was appropriately “stunned and appalled” by the recent incidents (especially since no one had even told him immediately about the flu error). We can assume that, even if heads don’t roll, procedures will be tightened and many presumably sensible changes will be made. As The New York Times noted solemnly in an editorial:

A small careless error in these experiments could be devastating.

These revelations provide the context for an unusual proposal of caution and public consultation made by a number of very prominent scientists last week. A group of researchers has proposed that policymakers and the public carefully consider the consequences before the introduction of a new practice known as "gene drives," which could lead to "addressing ecological problems by altering entire populations of wild organisms."

The way this might happen is by making very specific changes (using Crispr technology) to the genome of a sexually reproducing organism. These will create truly “selfish” genes — their frequency in a population will increase, even though they are less likely to reproduce. The engineered genes “drive” themselves through the population, possibly even driving the population to extinction. This sounds strange, but it was proposed in theory by Austin Burt in 2003, and technology is now catching up.

There is a peer-reviewed article in eLife by Kevin Esvelt, Andrea Smidler, Flaminia Catteruccia & George Church that gives a 39-page overview of the rapidly developing science. It is accompanied in Science Express by a three-page "discussion of risk governance and regulation intended specifically for policymakers.” The principal contributors to that are Kenneth Oye and Kevin Esvelt, who are joined by eight others (including all the eLife co-authors). Useful summaries can be found in the Boston GlobeMIT Technology ReviewScience Insider and MIT News.

They are of course quite right. These potentially huge environmental interventions deserve broad and careful consideration. And we do not have an adequate regulatory structure, nor a robust political or cultural tradition, nationally or internationally, to handle the novel questions involved.

The first application of this kind of approach seems likely to be on mosquitoes. But that is already well under way, albeit with older technology, making this more than a little misleading:

A Call to Fight Malaria One Mosquito at a Time by Altering DNA

That’s the headline The New York Times gave Carl Zimmer’s story. But in fact Oxitec, a British company that is not mentioned in either of last week’s scientific papers, has been working on modifying mosquitoes for yearsThe New Yorker had a feature on them in 2012. Oxitec focuses on dengue fever, which the US scientists mentioned, but perhaps that's less dramatic for whipping up public support than malaria. (Genewatch UK has much more on Oxitec and GM insects here.)

What the emphasis on mosquitoes does indirectly show is the scarcity of obviously appealing goals for using such an intrusive and potentially overwhelming technology. Sure, everyone can get behind eliminating malaria and dengue fever. And some people might like to rid the Great Lakes of invasive carp. No one likes rats, which as an invasive species are said to cause $19 billion in damage every year. And there is talk about reversing the evolution of plants that have become resistant to herbicides. 

All this suggests is that gene drives are part of a potentially very powerful technology whose application is as yet not entirely clear. The scientists involved deserve to be commended for raising the issue of appropriate regulation, and we should note that one of the safety proposals is a plan to reverse such interventions should there develop a problem. But the principal lesson of the recent CDC failures is surely that human error will always find a way through.

Besides, haven’t they heard of kudzu?

Previously on Biopolitical Times:





The Perfect 46: A “Science Factual” Film about our Near Future

Posted by Jessica Cussins on July 10th, 2014


Sitting down to watch the science fiction film The Perfect 46, I had the strange sensation of walking through a hall of mirrors. Intriguingly meta-conscious, and perceptibly close to reality, this film highlights the world of direct-to-consumer (DTC) genetics and makes it clear that this technology, now at our real-world doorsteps, could drastically shape our very near future.

The story centers on the aptly named company ThePerfect46, which starts off with a seemingly innocuous mission. Taking advantage of the fact that most Californians have had their genomes sequenced by this undefined point in time, it simply offers to analyze a couple’s genomes alongside each other to determine their ability to have a disease-free child.

But founder and CEO Jesse Darden isn’t content to stop there. In a move that sparks internal controversy and leads to one staff person abandoning the project, he rolls out version 2.0, which allows the company to search through giant databases and match random people together based solely on their ability to create genetically “ideal” children. The film cuts back and forth between a tense situation unfolding for Darden, flashbacks of his life, and a documentary film made about his rise and fall.

While The Perfect 46 is a fictional film, it is being promoted by a real-life website purporting to actually sell ThePerfect46 product (kudos for the smart marketing ploy!).

Darden, played quite well by Whit Hertford, is the star of The Perfect 46. He is a Steve Jobs-esque anti-hero: the disliked techie genius, the man behind the company that aims to improve humanity but ends up causing great harm. Darden comes across as “a tortured genius… a character that can be lauded and loathed in equal measure.” He is romanticized as smart and entrepreneurial, but his considerable personal and inter-personal flaws are never out of view.

Perhaps by now both Darden and ThePerfect46 sound strangely familiar. If so, it’s probably because the similarities to companies and products that actually exist right now are jarring. This is a kind of science fiction that is only just barely fictional.

In fact, writer and director Brett Ryan Bonowicz calls The Perfect 46science factual.” He invited a number of researchers to be consultants on the film and strove to show “a respect for science.” The scientific community has applauded his use of “authentic science” and raved about how the film is “a refreshing change of pace” because it doesn’t dissolve into a dystopian nightmare. Here Bonowicz elaborates on why he pursued this approach,

By making the film as factually accurate as possible, the conversation that the film creates should, I think, spark something that a more futuristic, fantastic treatment perhaps cannot. The topics we cover in the film genetics, eugenics, the moral and ethical implications of a consumer genetics service, and the role of government vs. a DTC model are discussions that deserve to be out in the public. This is a film of the moment.

In fact, you may find reality to be even more bizarre than this particular fiction. Just last year, the infamous DTC genetics company 23andMe received a patent for "gamete donor selection based on genetic calculations." The premise of the technology was that it could allow people to choose a sperm or egg provider based on probabilities of having a child with the kinds of characteristics they desired including “height, eye color, gender, personality characteristics and risk of developing certain types of cancer.” In response to backlash from the media about its “designer baby patent” with drop-down menus of characteristics, 23andMe assured everyone that it no longer had any plans to pursue the full range of possibilities described.

Another company, GenePeeks, has remained undaunted. GenePeeks launched just months ago, founded by molecular biologist Lee Silver, who writes broadly about how positive eugenics is both laudable and inevitable, and Anne Morriss, the mother of a sperm donor-conceived son who inherited the rare recessive disease MCADD.

GenePeeks’ “Matchright” is remarkably similar to the product offered by ThePerfect46. For $1995, “GenePeeks digitally combines your DNA and the DNA of potential donor matches to create a preview of thousands of personal genomes that your child could inherit, focusing on a panel of genes involved in childhood health and disease.” Based on this information, you can then preview your personal “catalog” of donors and further weed them out based on your preference for such characteristics as height, eye color, hair color, education level, and ethnicity.

What GenePeeks hasn’t marketed yet is its ability to test for much more than “health and disease.” But the patent it was awarded in January explicitly lists many non-medical traits: aggression, weight, breast size/shape, drinking behavior, drug abuse, eating behavior, ejaculation function, emotional affect, eye color/shape, hair color, height, learning/memory, mating patterns, sex, skin color/texture, and social intelligence, among others. It is thought to be possible to screen for just some of these traits, but all are covered by the patent.

Furthermore, GenePeeks doesn’t intend to limit its availability to sperm banks. It plans to expand soon and become available for “anyone planning a pregnancy in advance.” Of course, there is at least one fundamental flaw in the methodology of all these schemes: two people can have an infinite number of children with a full range of characteristics. Choosing a “preferred” donor can’t possibly absolve all risk.

In fact [spoiler alert], in The Perfect 46, a bug in the company’s algorithm results in the birth of 24 children with a severe genetic disorder. The horrific mistake causes the company to close its doors and forces Darden into solitude, where he continues to develop his work and reflect on what went wrong. What is perhaps most remarkable about the scenario is that no one is ever found to be at fault, even when some of the children die, and at least one suicide results. While Darden is depicted as a broken man, devastated by the fault in a system he designed, he is relatively unmoved by personal stories, including one about a loving couple that divorced after hearing they were “incompatible.” In his mind, “Just because I created something doesn’t mean I’m responsible for how people use it.”

Is this the kind of language that will be used around technologies governing life and death in our market-driven culture? The film probes many such important questions. How quickly does the right to know become the responsibility, or even the requirement, to know? What will people do with this information? And what happens, and who is accountable, when it is wrong?

(If 23andMe is anything to go by, some information will be wrong.)

Furthermore, can changing the kinds of people who are born really be considered “preventative medicine?” When recommendations about who is “fit” to be born are made by a commercial entity, does the absence of state involvement make the actions less eugenic? Is “perfection” what we ought to strive for? If so, what do we make of the founder – who is anxious, anti-social, awkward, not good-looking, and in the end, in “an irony that was lost on no one,” infertile?

The desire to know and control more, even when the meaning of the knowledge and our ability to control it is imperfect, can be powerful. But while it makes marketing sense for drug and genetic testing companies to pathologize more and more conditions, it probably doesn’t make sense for us. As these technologies become increasingly present in our lives, that point risks getting lost.

GenePeeks has just received $3 million in financing. The concept of adding genetic profiles to dating sites seems to be gaining steam. These trends suggest that this film could well be “more of a glimpse of the future than simply a hypothetical conversation about ethics and genetics.”

But if The Perfect 46 is “a sort of prequel to Gattaca,” hopefully we will find a way to stop short of that future.

You can find upcoming screenings of this thought-provoking film here, and check out CGS’s personal genomics news page here. Can you make it through the hall of mirrors, discerning the difference between fiction and reality?

Previously on Biopolitical Times:





    Cross-Border Surrogacy: Media Spotlight, EU Court Decision, International Forum

    Posted by Marcy Darnovsky on July 10th, 2014


    As The New York Times pointed out in a front-page article this past Sunday, “hiring a woman to carry a child” is not allowed in “most of the world.” But cross-border surrogacy, which took off in India more than a decade ago, continues to spread and grow. Now, a range of challenges connected to the practice is being addressed by a high-profile media account, a ruling of the European Court of Human Rights, and an upcoming international conference.

    The U.S. as a destination for contract pregnancy

    The New York Times story’s focus is on people from outside the U.S. who arrange a contract pregnancy here because it is illegal in their home countries. The featured commissioning parents in “Coming to U.S. for Baby, and Womb to Carry It” by Tamar Lewin are a gay Portuguese couple. Their story – and the baby they are now happily raising – frames the lengthy piece, but Lewin also details the obstacles and tribulations they faced, including a close brush with a sketchy surrogacy agency, a miscarriage, costs in the hundreds of thousands of dollars, and challenges getting citizenship in Portugal for their son.

    Lewin also includes critical comments from two feminist scholars, McGill University emeritus professor Abby Lippman and Ingrid Schneider of the University of Hamburg’s Research Center on Biotechnology, Society and the Environment. And she tells the story of Arizona surrogate Heather Rice, who came into conflict with the couple that hired her when, 21 weeks into her pregnancy, an ultrasound showed a problem with the fetus she was carrying.

    The article attracted more than 500 comments; an analysis by CGS summer intern Victoria Nichols (available by request) found those expressing opposition or concern about commercial cross-border surrogacy outnumbering those expressing support for it by about 4 to 1.

    (As a side note on media coverage, the shortened version of the article that appeared in the San Francisco Chronicle on July 9 omitted nearly all the material that would raise concerns about cross-border surrogacy – including the problems encountered by the Portuguese couple; the comments by Lippman and Schneider; Rice’s story; the cases of US surrogacy agencies, which are entirely unregulated, that have ripped off both intending parents and surrogates; and more.)

    European Court of Human Rights rules on children of surrogacy

    The legal status of children born as a result of cross-border surrogacy arrangements – that is, their officially recognized parentage and citizenship – has become an increasingly pressing issue. Difficult situations can arise when commissioning parents from countries that prohibit commercial surrogacy flout these laws by hiring surrogates in one of the few jurisdictions that allow it.

    Most of the time, the parent’s countries have permitted these children to return home with their social parents. But sometimes they live in legal limbo for years. In late June, the European Court of Human Rights (ECHR) ruled on cases brought by two French families whose children were conceived with their fathers’ sperm and third-party eggs, and carried and delivered by surrogates in California and in Minnesota. The children have U.S. citizenship because of their birth place, and their parentage had been legally established in the United States. They have been living with their families in France, but without legal recognition of their parental status.

    The ECHR did not question France’s right to prohibit commercial surrogacy, but ruled that refusing to grant legal status to the parent-child relationships of children born to surrogate mothers abroad “undermined the children’s identity within French society.”

    An international conference on cross-border surrogacy

    These questions and many others will be considered at the upcoming International Forum on Intercountry Adoption & Global Surrogacy, to be held this August in The Hague, Netherlands. The forum will bring together women’s health advocates, scholars, and policy and legal experts from around the world; its objective is

    to produce a body of knowledge that will inform the work of the Hague Convention as it moves ahead with implementation of the Hague Convention on Inter-Country Adoption, and with plans to create a convention on inter-country surrogacy.

    The Center for Genetics and Society is chairing the forum’s thematic area on “Global Surrogacy Practices.” We’ll be reporting in this blog on the forum’s deliberations and recommendations.

    Previously on Biopolitical Times:






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