14 March 2016
ByAppeared in BioNews 843
Produced by TED
Presented by Tania Simoncelli
TED (Technology, Entertainment and Design) has one mission, its website claims, and that is to spread great ideas. Certainly, TED's reach is not in doubt – from its beginnings in Silicon Valley in the 1980s, the non-profit has successfully promoted itself around the world, and its series of 20-minute conferences – 'Ted Talks' – are ubiquitous on video-sharing sites like YouTube. Yet TED is not without its detractors, whose complaints often focus on the TED Talks series – variously, that it is elitist, privileges style over substance, and encourages the over-simplification of complex ideas. TED Talks are popular, according to science writer Martin Robbins, because 'they make people feel good about themselves and give them the impression that they're part of an elite group making the world a better place'.
It was Robbins' comments that I found myself returning to when viewing a recent talk organised under the auspices of TEDx – an offspring of the non-profit organisation that promotes TED's values through bottom-up, independently organised events. The talk, titled 'Should you be able to patent a human gene?', is presented by Tania Simoncelli, former science adviser to the American Civil Liberties Union (ACLU).
It is, at first glance, a topic of considerable scientific and legal significance. Simoncelli narrates the story of the ACLU's successful legal challenge against biotech firm Myriad Genetics, which began back in 2010 and culminated at the Supreme Court in 2013 (see BioNews 709). ACLU's legal action centred on Myriad's patenting of two human genes, BRCA1 and BRCA2. People with certain mutations in these genes are at very high risk of developing breast cancer.
Simoncelli and her ACLU colleagues contended that Myriad's ownership of these genes, and the action the biotech firm took to protect its intellectual property, amounted to a 'monopoly' that stymied future research and harmed patient care. For over 20 years, the courts had accepted that 'isolated DNA' (i.e. purified genetic sequences) could be patented. The ACLU argued that Myriad's patents were actually attempts to control 'products of nature', which would be inadmissible in American law.
Simoncelli does a good job of drawing out the various metaphors used by lawyers to explain the process of isolating, and then patenting, DNA (gold-mining was the ACLU's metaphor – if you can't patent a naturally occurring substance like gold, then why could you patent human DNA?). It's hard not to be impressed by the success of ACLU's case – all nine Supreme Court justices sided with the ACLU against Myriad. But Simoncelli's discussion also invites questions about the appropriateness of TED for disseminating her message. Critics have derided the TED Talks series for its uniform reliance on 'eureka' moments, epiphanies and intellectual breakthroughs that propel the speaker's narrative. Simoncelli's talk largely avoids these, but she does produce a discussion oddly devoid of any grander moral purpose. Instead, her narrative is largely self-driven, which calls into question many of her later claims.
For example, Simoncelli's opening anecdote explains how she first became interested in gene patenting. She was sitting in her office at ACLU one day, when she decided that she needed a fresh challenge. So she spoke to her colleague Chris, a lawyer, for ideas on what to research next. Chris listed a number of legal issues at the intersection between medical and public law, one of which was gene patenting. An interested Simoncelli returned to her office, briefly undertook some research, before sending an email to Chris with links to a few articles. Chris immediately burst into her room. 'Oh my God!' he exclaimed excitedly. 'Who can we sue?'
The intention of this anecdote is undoubtedly to capture the audience's attention, to enliven what is a fairly dry medico-scientific subject. But the problem is that, in opening her talk in this way, Simoncelli gives the impression that she was more interested in alleviating boredom than defending civil liberties. This sits incongruously alongside the ACLU's commitment to 'defending freedom and liberty', of course, but it also makes one doubt the sincerity of her later comments.
Simoncelli cites two patients who were disadvantaged because Myriad allegedly held such a tight grip on the BRCA1 and BRCA2 patents. Yet her discussion of them is rather perfunctory and offers no clear relationship between Myriad's behaviour and the disadvantages that accrued to the patients. Indeed, Simoncelli's talk then gives way to a story of how she and Chris identified a biotech company to sue, compiled a case and recruited plaintiffs. This may be a perfectly candid insight into how ACLU brings a case, but it does nothing to shake the impression that Simoncelli's over-riding motive was to experience the excitement of litigation. Her numerous references, throughout the talk, to the David vs Goliath battle the ACLU faced did not help dispel this image either and felt more like self-congratulation.
It is unclear whether this stress on the excitement of litigation is a product of the TED format, or is genuinely how Simoncelli recollects her experiences with ACLU. Either way, in personalising the ACLU case so extensively, Simoncelli ducked some of the bigger questions around its wider relevance. (Myriad’s patents were set to expire in 2016 anyway, and the share value of the company actually rose following the Supreme Court’s judgement). But, given the impact of that Supreme Court decision on the pharmaceutical and genomics industries as a whole, it felt like a missed opportunity to engage with the broader debate about the role of big pharma in gene patenting.