14 December 2018

Cultures

I occasionally allow myself to step away from writing about data protection (privacy, confidentiality, secrecy) and health sector regulation by taking a walk on the wild side. Here's the abstract from a presentation at Griffith Law School earlier this week and associated book chapter.
Bullies, Blokes and Buggery: Homosociality, Justice and Male Rape through an Australian lens 
The depiction in Australian cinema of male-on-male sexual assault offers a lens for understanding homosociality and justice within Australia and across the globe. 
Male rape – an assault that objectifies the victim and valorises the perpetrator as both powerful and outside the rules – is a recurring but largely unrecognised feature of the Australian screen. It is evident in for example iconic works such as Wake in Fright (1971), The Chant of Jimmie Blacksmith (1978), Mad Max (1979) and Ghosts of the Civil Dead (1988). Those works often use a distinctly Australian landscape, one that is recognisably not the American West or Scandinavia. 
They involve brutality in an environment in which legal authority – conventions about rules and remedies – is absent, weak or indifferent. It is an environment in which bystanders, the homosocial ‘mates’ whose deepest emotional relationships are with each other, are contemptuous or even amused by the ‘unmanning’ of a victim through force or intoxication, placed outside their brotherhood and without the redemptive ending in for example The Shawshank Redemption (1994). 
The chapter suggests that the films offer a view of belonging, power and exclusion that is at odds with the celebration of difference in Priscilla, Queen of the Desert (1994) or Holding The Man (2015) and with adventures such as Deliverance (1972). If ‘mateship’ is a distinctively, although increasingly fictive, Australian value the films offer a dark view of complicity and violence within the sunburnt country, a land of sweeping plains, kangaroos and eyes wide shut to brutality. At a global level they tell us something interesting about anxieties at the heart of manhood and about the efficacy of law where victimisation excludes men from justice.
En route I caught up with 'Biohacking by Ali K. Yetisen in (2018) 36(8) Trends in Biotechnology 744.

Yetisen comments
Biohacking is a do-it-yourself citizen science merging body modification with technology.The motivations of biohackers include cybernetic exploration, personal data acquisition, and advocating for privacy rights and open-source medicine. The emergence of a bio-hacking community has influenced discussions of cultural values,medical ethics, safety, and con-sent in transhumanist technology. 
Epidermal electronics, biosensors, and artificial intelligence have converged as healthcare technologies to monitor patients in point-of-care settings within the Internet of Things (IoT). These technologies have created a community of hobbyist software developers involved in the quantified-self movement. The self-experimentalist community is primarily interested in tracking their daily physical and biochemical activities to build a library of personal informatics in order to main-tain a healthy lifestyle or improve body performance. The growing interest in this‘tech-savvy’community has motivated questioning the possibility of experimenting with implantable technologies. The emergence of implantables for biometric animal identification has encouraged self-experimentalists to chipify themselves in order to interact with computers in the IoT. Inspired by transhumanism, which advocates the enhancement of human body and intelligence by technology,the overlap between self-experimentation and medical implant domains has created a vision to modify the human body and document their experiences in social media for open-source medicine. 
The movement of biohacking has begun with a self-experimentation project(Cyborg 1.0, 1998) of Kevin Warwick who implanted a radio frequency identification (RFID) tag to his arm in order to control electronic devices. In another experiment, a multielectrode array was implanted in Warwick’s arm to create a neural interface, which allowed controlling a robotic arm and establishing telepathy system with another human implantee via the Internet. Self-experimentation with biomaterials has also been popularized with the performance art works of Stelarc,who had a scaffold implanted in his arm (Third Ear, 2007). The synergy of cybernetics, biopunk, and citizen science has led to the formation of a media-activist biohacking community. Figures in this transhumanist community include Amal Graafstra (tagger), Tim Cannon, LephtAnonym, and Neil Harbisson. These technology activists, also known as grinders,implant chips in their bodies or have them implanted. Their primary motivations include human–electronic device communication and self-quantification, and cosmetic enhancement[. Another over-arching goal of this community is to increase scientific literacy as citizen scientists. The biohacking community is actively engaged in the development of off-the-shelf protocols at low cost, open access research and collaboration by creating individual pursuit of inquiry. Bio-hackers document and share their protocols, equipment designs, and experiences on the Internet
The article has a useful inventory of implants.

'The Security Implications of Synthetic Biology' by Gigi Gronvall, a more insightful piece in (2018) 60(4) Survival: Global Politics and Strategy 165-180, comments
Advances in synthetic biology hold great promise, but to minimise security threats, national and international regulation will need to keep pace. Consumers have grown accustomed to personalised products. There are T-shirts made to order, books printed on demand, music-streaming services that cater to individual tastes, personalised news feeds and lists of suggested apps. 
This trend towards personalisation has even been extended to biology: genetic information and biological techniques can now be used by individuals to meet their personal needs. Biological information, such as the number of steps one takes in a day, one's heart rate or one's genetic code, has become trackable, and can be compiled for individualised purposes. Biological laboratory techniques, once the sole purview of scientific professionals, are likewise becoming increasingly accessible to amateurs, yielding information such as what a person eats or where they live. The trend towards the personalisation of biology would not be possible without synthetic biology, a growing technical field that aims to make biology easier to engineer. Synthetic biology is widely seen as an exciting new branch of the life sciences, but can be difficult to define  One group of researchers has described synthetic biology as ‘a) the design and fabrication of biological components and systems that do not already exist in the natural world and b) the re-design and fabrication of existing biological systems’. Others define synthetic biology in terms of what the field aims to do: make biology easier to engineer. While bioengineering has been around for a while, synthetic biology is more powerful: it has been described as ‘genetic engineering on steroids’ by one of its founding practitioners. Synthetic-biology tools, such as CRISPR (clustered regularly interspaced short palindromic repeats) for gene editing, gene synthesis and gene drives, are being used in a wide range of life sciences.
Scientists working in synthetic biology envision a time when biological traits, functions and products may be programmed like a computer. While there is a great deal of research yet to be done to allow for this, the convergence of high-speed computing power, intense research interest and some early commercial successes during the last decade has spurred the growth of the field. Publications about synthetic biology have increased from 170 per year in 2000–05 to more than 1,200 per year in 2015 More than 700 research organisations in over 40 countries are undertaking work in the field.
One major outcome of this growth is that biology is becoming industrialised. While biological processes have long been used in industrial settings – for example, to produce some medicines and vaccines, as well as certain consumer products such as beer and wine – they are increasingly being exploited for manufacturing, replacing the use of petrochemicals and resource-intensive harvesting from nature. Synthetic biology is now used to alter the internal machinery of microbes so that they produce a variety of desired molecules, from biofuels to flavour compounds to pharmaceuticals.  This has expanded the biological footprint of a range of industries including fuel, agriculture, medicines and mining, and of products such as construction materials, perfumes, fibres and adhesives. The economic implications of synthetic biology are vast and growing: the global market was valued at $3.9 billion in 2016, and is anticipated to grow at an annual rate of 24.4% to reach over $11bn by 2021. McKinsey and Company has reported that the total economic impact of synthetic biology, including applications in energy, agriculture and chemicals, could reach $700bn to $1.6 trillion annually by 2025.
While clearly useful on an industrial scale, synthetic biology can also be useful to individuals. It can yield information that would never merit a traditional research grant from the National Institutes of Health (NIH) or the Wellcome Trust. In contrast to the research funded by agencies like these, which is intended to foster benefits at a societal level, personalisation allows for the acquisition of information and products that are immediately useful to particular individuals. Scientific advances and the democratisation of synthetic biology should bring about an exciting future, but will also lead to changes in national and international security, the governance of biological research, and safety. 
Do-it-yourself biology 
Synthetic biology has already produced one of the most promising developments in cancer treatments for years, known as chimeric antigen receptor T-cell therapy, or CAR-T therapies.  In this treatment, a patient's own T cells are altered in a laboratory so that they will attack cancer cells. The Food and Drug Administration (FDA) has approved two CAR-T therapies, one to treat children with acute lymphoblastic leukaemia and the other to treat adults with advanced lymphomas. The complete remission rate in a trial of 100 adults with refractory or relapsed large B-cell lymphoma was 51%. 
The trend towards the personalisation of biology is not limited to FDA-approved therapies, but is also in the hands of individuals curious about their own bodies. There is intense public interest in harvesting and making sense of personal biological information from health-monitoring devices.  Services like 23andMe and Ancestry.com provide clients with detailed genetic information, including clues – and sometimes surprises – about their ancestry. Their users can find out whether they potentially have a higher likelihood of developing breast cancer (as established by the presence of BRCA genes) or Parkinson's disease. 
PatientsLikeMe is another example of a service generating personalised health information. On this for-profit site, people who suffer from one or more of 2,800 listed conditions share their medical data and reactions to investigational drugs. The company claims that patients who use their service will learn more about their medications and conditions, make connections with others who share their illnesses, and ultimately ‘change the future of personalised health’.  The data provided to this site has led to original published research, and to the development of an easier way to enrol patients in clinical studies.  
Non-traditional research environments, including home- or community-based laboratories, are becoming more common, an approach that has been called DIY Bio (do-it-yourself biology), bio-hacking or citizen science. Community laboratories where bio enthusiasts can gather and work together, alongside many more DIY communities that lack laboratory space, have been established in New York, Boston, Seattle, San Francisco and Baltimore – as well as in Budapest, Manchester, Munich, Paris and Prague.  According to DIYBio.org, a charitable organisation formed with the mission of ‘establishing a vibrant, productive and safe community of DIY biologists’, there were 44 DIY Bio groups across the US and Canada, 31 in Europe, and 17 in Asia, South America and Oceania as of early June 2018.  These laboratories, which typically charge membership fees to purchase equipment, are dedicated to making science accessible and frequently offer educational programmes. 
The Baltimore Underground Science Space (BUGSS), for example, recently held a class for people aged ten and up to learn about bioluminescence in bacteria, during which a gadget was built that puffs air into bacterial cultures to make the bacteria glow.  Participants were directed to take a stool sample at home and to quickly inactivate it so that no living microbes were brought into the laboratory. At the lab, the participants attempted to use polymerase chain reaction (PCR) to amplify the DNA of the microbes so as to identify them. Participants could also compare samples taken before and after embarking on a diet, or of two different people. 
In the hands of amateurs, straightforward ‘DNA-barcoding’ techniques can be used to determine whether purchased sushi is actually made from the species advertised.  Other techniques can be used to detect the presence of melamine, a poison, in baby formula.  The ease of use offered by such technologies has inspired new biological services as well. For instance, apartment-complex owners have required stool samples from tenants’ pets to genetically identify them, for the purpose of identifying and deterring those who do not pick up after them.
The pipeline for non-traditional biological exploration is expanding, thanks to iGEM, the International Genetically Engineered Machine competition. iGEM began more than a decade ago as a class offered at the Massachusetts Institute of Technology (MIT) in Cambridge, MA, that was modelled on robotics competitions intended to draw students into engineering fields.  In iGEM competitions, teams comprising undergraduates from around the world are given a kit of standard biological parts called BioBricks. Over a summer, and with the help of instructors, the teams use the parts and others they create to engineer biological systems and operate them within living cells. The competition has grown from involving fewer than two dozen undergraduates in its early years to drawing more than 6,000 undergraduates, high-school students, DIY Bio practitioners and ‘overgrads’ per year from more than 40 countries, with 30,000 alumni having already participated. Many of the projects aim to tackle real-world problems and to develop solutions that can be used in low-resource settings, such as a bacteria-produced blood substitute that may be stored for long periods. 
As people acquire more biological information about their environment, they will increasingly have the opportunity to make more personalised and biologically informed choices to improve their health, pursue new hobbies and even care for new types of pets. While these are positive outcomes, there is also the potential for negative outcomes, given the possibility that synthetic biology could be misused to cause deliberate harm. There will also be many new opportunities for quackery and dangerous self-experimentation that could spread via social media and thus become a contagious phenomenon. Biological safety practices will be challenged, and there could be some unwelcome surprises