Power to the Patient [SIGINT12]
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Published on Jul 2, 2012
Power to the Patient
How Crowdsourcing could change Biomedicine
Thanks to technological advances biomedicine has changed rapidly in the last years. Large amounts of genetic/biomecial data can be produced at low cost. In the near future it may be standard to produce full-genome scans to diagnose diseases and to treat patients more effectively using personalised drugs. Even though ... has been generated already, the lack of data sharing slows down the progress of biomedicine significantly. This lack does not only arise due to the competitiveness of the field, but also because bioethics and privacy concerns have to be kept in mind. Should scientists share the data of participants? Should patients get access to the raw data produced during diagnosis? And could this be a solution to open up biomedicine while keeping those concerns in mind? We will present how biomedicine has already changed, where those advances are used today in a clinical setting and how crowdsourcing could be a driving factor in opening biomedical data.
Traditionally, biomedical research as well as health records focussed on the history of diseases in an individual, accompanied with medical imaging and diagnostics by means of tissue samples, blood tests etc. There is a growing trend to supplement this data with a wide array of genetic information, which is likely to increase over the next years.
Over ten years have passed since the first human genome was fully sequenced. While some of the claims on how the availablity of genetic data will revolutionize medicine may have been exaggerated, the sequencing of the human genome definitely has changed the perception and research on genetic disorders.
This progress is made possible by the increasingly dropping price of sequencing. The price of sequencing a human genome -- which costed over 3 billion USD in 2000 -- has dropped to less than 10.000 USD and is already available through companies on the mass-market. Other suppliers recently presented sequencers for less than 1.000 USD. Customers can get around 1 million so-called Single Nucleotide Polymorphisms (SNPs), of their genome tested for about 200 USD, or their complete exome sequenced for less than 1.000 USD, without the need to enroll in scientific studies or visiting their physician, through Direct-To-Consumer testing companies.
Although some research projects, like the annotation of the EHEC-causing Escherichia coli-strain, apply open data and crowdsourcing principles, this sharing of data unfortunately still isn't a widespread practice in biomedical research -- especially in studies which enlist human participants. A number of reasons can be identified, including ethical and legal constraints as well as the prevailing rather closed culture of this field. Some example ethical and legal issues that come with the creation of large quantities of DNA sequence data are whether researchers should share the raw data with the participants of their studies, let alone the rest of the world, and whether they should share incidental findings about diseases or non-paternity with research participants. But there are many other issues which will also need to be discussed.
The number of complete genome sequences is rising as is the number of people who have undergone DTC genetic testing (23andMe already reported ~100.000 customers in mid 2011). Aside from the few reference genomes, much of this data will be kept behind lock and key on the hard drives of researchers and physicians, as well as the genotyping data of companies like 23andMe. One should keep in mind that the lack of access comes at a cost: Reusing this data isn't easily -- if at all -- possible. Recognizing disease-causing mutations often needs data of multiple individuals and especially for rare conditions it is hard to get enough participants enrolled in studies.
An elegant way of promoting open data in the biomedical community, while keeping the ethical problems in mind, is to crowdsource the data collection to the people who have to deal with the consequences of making the data available: The participants and patients themselves. This approach stops treating them as passive participants, but instead engages them as central agents in promoting scientific progress. We will show where community efforts are already working on implementing crowdsourcing and how this data can be used to gain new scientific knowledge.
Speaker: Bastian Greshake, Fabian Zimmer
Event: SIGINT 2012 by the Chaos Computer Club [CCC] Köln
Location: KOMED; Im Mediapark 7; 50670 Cologne; Germany
Start: 19.05.2012 20:00:00 +02:00
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