Shifting power dynamics in genomic research

 

Donation of human tissues has been at the core of medical research in Europe since religious restraints were relaxed towards the end of the Middle Ages, making this altruistic act socially and morally acceptable. Altruism is the key word—the individual donates their tissues for the greater good: for the advancement of science, the extension of boundaries of medical knowledge, and for the potential to deliver better medical care. The individual donating their tissues or blood does so with no expectation of return or personal gain, and hands over sample ownership to the scientific community in confidence that ethical use will be made of it.

Many would assume this is still the case… but is it? Genomic research has opened up new and exciting avenues for medical research that have the potential to dramatically transform the way medical practitioners strategically select treatment regimes. Personalised medicine is no longer a pipe dream, it is clearly in the cards—the pack has been dealt, and the game is well underway.

The game-changer here is the genome. The established practice of donors passively handing over their samples of blood or tissues for research is impacted by the fact that DNA is in focus here. Their DNA.

Dr Gillian M. Martin

Should this make any difference? Some argue that the fundamental process of donating for the greater good, with no consequent active involvement, is still the cornerstone of the process. There are, however, important shifts in the current social and cultural context that impact the researcher-donor dynamic. Two of these are of particular relevance here. The first is knowledge: the accessibility (via the web) of information about the research process, its impacts and applications, have led to the burgeoning new field of citizen engagement in research. Genomic research, in particular, attracts participants who are personally motivated in the process, with research into genetically linked diseases offering hope for their relatives and future generations. The second shift is that of rights over personal data. Individuals’ rights to the control of their personal data are to be entrenched in the General Data Protection Regulation in May 2018. This EU regulation will sanction a process that is already clear in practice: the trend for individuals to demand control over the ways their personal data are used and stored.

This is where the detached and passive sample ‘donor’ exits stage left, and the research participant takes the limelight. Cynics might claim that nothing much has changed. Samples are collected with consent and research continues, but there is an exciting difference in the dynamics involved. The participant now has the potential to remain engaged by using a process of web-based consent. The various versions of this eConsent or ‘dynamic consent’ that are now available offer the participant and researcher a real-time channel of communication which enables optimum use and reuse of the sample and the accompanying personal data that make it so valuable. The biomedical samples now come with persons digitally-attached: individuals who actively engage in the research process by offering flexible consent via web-based tools. When pooled and stored within biobanks, these samples offer a viable source of DNA with real potential for wide use in research.

Within this scenario, ethicality is enhanced as banked anonymised samples can be used to their full potential and shared, with consent, within the research community. In this way doing justice to the individual participant’s key motivation: to advance scientific knowledge for the benefit of future generations.

Author: Dr Gillian M. Martin

Borderline

 

At the European Organization for Nuclear Research (CERN), an army of researchers from around the world are studying the very structure of our universe, starting from the very basic constituents of matter: the fundamental particles.

CERN has some of the largest laboratories in the world, boasting cutting-edge purpose-built instruments like particle accelerators and detectors. It therefore comes as no surprise that, when lecturers from the G. F. Abela Junior College’s Physics Department announced they were organising a visit, all the positions available were quickly snapped up.

There was a recurring theme present throughout our CERN experience: ‘borders’. During our stay, we crossed the Franco-Swiss border several times from our lodgings in France to CERN in Switzerland. Coming from a small islandstate, where any inter-country travel requires a plane or boat ticket, it was a little surreal being able to put our passports away and walk to Switzerland.

The visit helped us reflect on the boundaries we create when trying to study how nature works. We compartmentalise topics into physics, chemistry, or biology, when really these topics are all one large subject seen from different viewpoints. This was most evident in the permanent exhibitions at CERN that touched on topics including atomic structure, PET scans, and the development of computer technology at CERN. There were no borders between the different subjects we studied in different departments back at Junior College.

During this amazing week, we experienced tours of the facility using CERN’s own transport. Many of the researchers use bicycles, taking advantage of all the green areas. We saw dedicated individuals working together for the good of the world, no matter their colour or creed. They overcame yet another border: a cultural one. Their mission is simply to produce outstanding work that will help us understand the universe around us.

The trip opened our eyes in many ways. As a group, we learnt together and supported one another when needed. We shared ideas. Discussed. We were our own mini-unit. With an understanding of this dynamic and all the fields involved, some of us have even been inspired to add a new goal to our list: join the team at CERN.

Authors: Maria Victoria Vella, Josephine Vella and Karen Muscat
This visit was made possible thanks to our sponsors: Liquigas Malta Ltd, Mizzi Motors, and Buzzer Stationers & Publishers. We wish to thank our lecturers for organising the experience, namely Ms. M. Soler, Ms. A. Vella, Mr. C. Busuttil, Ms. L. Bonello, and Ms. E. Bugeja.

 

The floating lantern

In Japan, candle-lit lanterns are released into rivers in Toro nagashi to guide the spirits of ancestors back to the other world. The lanterns exude beautiful, orange light as they float downstream. At times they group together, creating what look like small, glowing platforms. This very image was what inspired the floating platform Dr Rebecca Dalli Gonzi is building, together with her colleagues Dr Joseph Falzon, Prof. Tonio Sant, and NAS Limited. The project is being consulted with Prof. Claire DeMarco and ALTERN Limited.

By bringing together the sea, the arts, architecture, and engineering, they are giving rise to a lightweight platform that sits on the water’s surface, providing a unique space for artistic performances, installations, and exhibitions. The lanterns’ rectangular shapes are being replaced with hexagons—a more efficient fit. Holding everything together are mounts or magnetic currents, depending on research results. The modular approach allows adjustability in shape and size, potentially seeing the platform expand beyond its current three meters, while making it easy to disassemble, respecting the environment it inhabits.

The team hopes that the platform, or lantern as it is affectionately referred to, will provide artists and practitioners with a new approach to their art that will bring joy, while also inspiring creative thinking in the construction industry.

Author: Dr Rebecca Dalli Gonzi

The circular economy and Malta

Dr Jonathan Spiteri

Our globalised economy has generated wealth and prosperity for millions of people around the world. Living standards have been raised to unprecedented levels. But this comes at a cost. The environment has suffered greatly, not only in terms of constant extraction of natural resources, but also at the hands of polluting processes and end-of-pipe waste.

Recognising that economies, and indeed our planet, have finite resources, the circular economy has become a popular concept among policymakers and stakeholders in recent years. The current linear ‘take, make, use, and throw away’ model of production entails substantial value losses and negative effects along the material chain. Because of this, we should ideally be designing and manufacturing products for continuous reuse and recycling, maximising resource efficiency, and minimising leakages and waste.

The appeal of the circular economy lies in its various environmental and economic benefits. Using secondhand materials and waste within business could cut costs, while their sale adds a potential revenue stream. The circular economy also offers new and vast business opportunities in areas such as product eco-design and product/material regeneration, all of which help create high-skilled jobs and investment in new technology.

The idea of the circular economy is particularly relevant to Malta, given its geographical circumstances, high import dependency, and lack of natural resources. Embracing the principles embodied within the circular economy concept would have an immediate positive impact on the environment while benefitting Malta’s long-term economic prospects.

However, we are still at the doorstep of circularity. Malta’s natural resource productivity fell by 7.6% between 2000 and 2015, with increased domestic material consumption outpacing economic growth. Waste management in key sectors like construction remains a major issue.

To encourage the shift from concept to the creation of circular economy business models, the University of Malta is part of the R2Pi Horizon 2020 project. Among other goals, it hopes to identify both market and policy failures that hinder the uptake of such models by business entities across Europe.

Author: Dr Jonathan Spiteri
R2Pi Horizon 2020: www.r2piproject.eu
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 730378.

In search of perfect silicon

Silicon is the go-to material for solar devices like photovoltaic panels despite its relatively low energy conversion rate of 15-22%. Researchers all over the world are analysing materials and creating new ones to find a better solution. A lucky handful are armed with a laser scattering tomograph (LST), the best instrument for the task.

An LST illuminates the sample material with an infrared laser beam, which scatters wherever it finds a defect. If there is a defect in a material’s structure, even one just a few nanometers wide, the very sensitive CCD camera at the other end of the machine will pick it up, allowing researchers to learn and adapt. It also boasts a robotic system that allows it to automatically load multiple samples at once.

The LST is very rare, but fortunately, one has found a home at the University of Malta’s (UM) Institute for Sustainable Energy (ISE), a brand new, state-of-the-art facility aimed towards finding efficient solutions for harnessing solar power to its fullest extent. ‘There are probably 10 to 12 of these worldwide,’ confirms Prof. Luciano Mule’ Stagno, Director of the Lab at the ISE. ‘Ours is one of the few in the world to be found in a university, almost certainly the only one in a university in Europe. Most of these machines are in industry settings,’ he says.

This enables the UM to conduct cutting-edge research in a field that is practically nascent, putting it at the forefront. With the LST, material engineers could unlock the secrets behind the perfect variation of defect-reduced silicon. This rise in efficiency could have a substantial impact on the worldwide sustainable energy market.

Author: Prof. Luciano Mule’ Stagno