[gdlr_text_align class=”justify” ]The first plenary session of the GA4GH was held on March 4, 2014 at the Wellcome Trust in London, UK. As of February 2014, the alliance consists of 148 organizations including biomedical research institutions, information technology companies, healthcare providers and patient advocacy groups. The meeting was a starting point of discussion of the activities of the four Working Groups of the alliance – Regulatory and Ethics, Data, Clinical and Security – and how these groups will entertain the overall goal of the GA4GH in advancing human health through standardized clinical and genomic data sharing methods.
Dr. David Altshuler, Chair of the Transitional Steering Committee of the GA4GH, mentioned that the working groups will function on an iterative process, where decisions will be made based on implementation of constant feedback from member organizations. It is obvious that for the effective functioning of the GA4GH, iteration and communication are necessary. The GA4GH has also launched its official website recently, offering information about the mission, current work, memberships and latest activities of the Working Groups.
While the meeting discussed each Working Group’s individual aims in detail, it also addressed the aims of the alliance in terms of idealism versus reality. Are we ready for data sharing? If so, are we working towards achieving the best computational and ethical solutions? Through creating harmonized approaches, the GA4GH aims at catalyzing data sharing and identifying the best practices in doing so. The GA4GH aims to act as a clearinghouse; where the network effect of sharing the best practices are easily identified.
Among the Working Groups, a crucial emphasis was laid on the Regulatory and Ethics Working Group (REWG). This group will generate an International Code of Conduct in Genomic and Clinical Data Sharing by following through an intensive discussion among the members of the GA4GH. The REWG will focus on developing Principles and Implementation Practices that are extracted from policies that guide ethical and legal data sharing and focus on international human rights.
The Clinical Working Group will focus on representing phenotypic data and linking it to genotypic info. By combining efforts from biomedical informatics, EHRs and data extraction, they hope to devise a digital solution that helps analyze phenotypic information and aid in early diagnosis of diseases. In terms of the Data Working Group, the main issue they face is agreeing on a standardized computer interface. Data working groups will also focus on storing data on the cloud in order to ensure universal, secure access. While these projects sound very promising, the main issue lies in resolving the regulatory and ethical problems over technical difficulties.
The GA4GH is a non-profit alliance but the financial factors driving the activities of this alliance were barely touched upon during the plenary meeting. However, Dr. Altshuler stated that they aim at running the alliance as a fast paced, non-profit startup. With promising speeches from representatives from global organizations like EBI, ELIXIR and P3G, we hope that the aims of the GA4GH are put into action soon, if not so already. The key to the success of the GA4GH lies in the simplicity of their approach. Apart from that, public engagement among patient advocacy groups is crucial as well. If the work of the GA4GH remains skewed towards the scientific community, focusing on opinions from clinical geneticists and physicians, we fear that patients and general public will not see be able to foresee the benefits of standardized data sharing and control.