The symposium, which was inspired by the wonderful recent PFC & Berkman Center Big Data conference, featured enlightening speeches by former PFC fellows Nicholson Price on sufficient incentives for the development of personalized medicine and Jeff Skopek on privacy issues. In addition we were lucky enough to have Peter Yu speaking on “Big Data, Intellectual Property and Global Pandemics” and Michael J. Madison on Big Data and Commons”. The presentations and recordings of the session will soon be made available on our Center’s webpage.
Thanks everybody for your dedication, inspiration, great presentations and an exciting panel discussion.
“Legal Dimensions of Big Data in the Health and Life Sciences – From Intellectual Property Rights and Global Pandemics to Privacy and Ethics”
By PI Timo Minssen
“Our goal is to create a European Open Science Cloud to make science more efficient and productive and let millions of researchers share and analyze research data in a trusted environment across technologies, disciplines and borders”.
– Carlos Moedas, EU Commissioner for Research, Science & Innovation
“!The European Cloud Initiative will unlock the value of big data by providing world-class supercomputing capability, high-speed connectivity and leading-edge data and software services for science, industry and the public sector.”
– Günther H. Oettinger, Commissioner for the Digital Economy and Society
Artemisinin, a drug used to treat malaria, has been a recent topic of public discussion after its discovery was recognized with the Nobel Prize in Physiology or Medicine on October 5. The 2015 prize was awarded to three researchers who developed treatments for parasite-caused diseases, with half the award going to Youyou Tu, who is credited with the discovery of artemisinin. Artemisinin has benefited hundreds of millions of people around the world. Yet the recognition for artemisinin’s discovery comes at a time when public health officials are becoming more concerned about its ongoing effectiveness and struggling to implement policies to slow the spread of artemisinin resistance. Continue reading →
In recognition of how little we talk about global health, I am turning my attention back to my roots for today’s post.
On Jan 22nd, Bill and Melinda Gates launched their annual letter. For those readers who live fully under a domestic health policy rock, Bill and Melinda Gates are co-chairs of the Bill and Melinda Gates Foundation, which donated more than $1 billion in 2013 to global health activities. Aside from that enormous sum, the foundation is commonly looked upon as an example of what strategic philanthropy can do.
The 2015 Annual Letter, launched on January 22nd, resembles previous letters insomuch as it strikes an optimistic tone about the progress made to date and makes bold claims about the future impact of the foundation. Specifically, the Gates’ tell us that they are aiming to have impact in four areas in the next 15 years – health, farming, banking and education. In the area of health, the letter specifies a focus on several specific projects, including cutting the number of children who die before 5, reducing the number of women who die in childbirth, wiping polio and three other diseases out entirely, finding the secret to the destruction of malaria and forcing HIV to a tipping point.
For our purposes, what’s most interesting about the letter is what it doesn’t say. It makes no mention of law or policy and makes only passing reference to regulation and governance. What is this about?
Ebola is ravaging parts of Africa, yet it is not the worst health problem facing people in the region. Millions more are infected with and die every year from diseases like malaria, TB, and HIV/AIDS because they cannot access the essential medicines they need. To change this, we need to understand where we are succeeding in combating these diseases, and where we need to focus our efforts. Until now, this information has been sorely lacking.
Fortunately, the beta for a new Global Health Impact index has just launched that can help us address the access to medicines problem (check out: global-health-impact.org). Using the index, you can see the impact of the drugs for HIV, malaria, and TB in each country in the world. You can also get a sense for the overall impact we are having on the different diseases in the model. Finally, one can see drugs’ impacts by originator company. Continue reading →
I’m a little late to this discussion, but I want to talk briefly about the ALS Ice Bucket Challenge and how we make our decisions on charitable giving.
I’m sure by now most readers understand the basic concept of the challenge: individuals can choose to either record a video of themselves pouring ice water over their heads or to donate money to the ALS Association (or both — the rules don’t seem to be particularly consistent in application). After the challenge is undertaken, the video is shared on social media or a message is posted announcing that the individual has donated, and then the individual “nominates” others for the challenge.
This challenge has virtually taken over the web in the past couple weeks (perhaps, as one writer commented, because it lets participants “(a) exhibit his altruism publicly and (b) show off how good he looks soaking wet.”), raising over 88 million dollars as of August 26, 2014. As expected, however, the challenge was not without its very vocal critics. Many were opposed to the narcissistic nature of the challenge, while others, more relevantly, questioned donating so much money to a charity and to fight a disease based on an internet fad. Continue reading →
One of my previous blogs discussed the growing threat of antimicrobial resistance (AMR). I concluded that antimicrobial resistance is a growing and complex threat involving multifaceted legal, socio-economic and scientific aspects. This requires sustained and coordinated action on both global and local levels.
A recent medical review on drug resistant tuberculosis supports these findings and provides further fodder to the debate. In their study, which was published in April 2014 in The Lancet – Respiratory Medicine, the authors analyzed the epidemiology, pathogenesis, diagnosis, management, implications for health-care workers, and ethical and medico-legal aspects of extensively drug-resistant tuberculosis and other resistant strains. In particular, the authors discussed the increasing threat of functionally untreatable tuberculosis, and the problems that it creates for public health and clinical practice. The paper concludes that the growth of highly resistant strains of tuberculosis make the development of new drugs and rapid diagnostics for tuberculosis—and increased funding to strengthen global control efforts, research, and advocacy—even more pressing.
This was also recognized in the recent WHO’s Global Surveillance Report on AMR, which was published this April. It is the first WHO report that studied the problem of AMR on a global level. Noting that resistance is occurring across many different infectious agents, the report concentrates on antibiotic resistance in seven different bacteria responsible for common, serious diseases such as bloodstream infections (sepsis), diarrhoea, pneumonia, urinary tract infections and gonorrhoea. The results demonstrate a wide-spread growth of resistance to antibiotics, especially “last resort” antibiotics. In particular the report reveals that this serious threat is no longer a mere forecast for the future. AMR is a contemporary problem in every region of the world and has the potential to affect anyone, of any age, in any country. Consequently the WHO report concludes that antibiotic resistance is now a major threat to public health that needs to be tackled on a global level.