Molecular Systems Biology | The Seven Stones

Google Health, Biomedical Mutual Organizations and Open Consent

GoogleHealth.jpg

Google Health, the new service offered by Google is now online (via bbgm, Life as a Healthcare CIO, GTO). This service helps users to store, organize and share their health profile and medical records, to use a variety of health-related online services and to search for medical information. Understandably, Google places great emphasis on data security and confidentiality. In this regard, I thought it might be worth highlighting several recent and thought-provoking discussions around the issues of data privacy and participative medical investigations.

In a provocative editorial (Bains, 2007, see also Nature Medicine News article), William Bains advocates that collectives of individuals, so-called ‘Biomedical Mutual Organization’, could organize themselves on a voluntary and self-funded basis to conduct clinical trials that would rely on extensive self-experimentation, data sharing and pooling of analytical resources. This proposal challenges the classical view that those who conduct a clinical trial should avoid conflicts of interest with respect to the outcome of the trial. On the other hand, Bains argues, this system would allow more innovative and radical trials to be performed, given that the subjects of the trial would have increased trust in the research process (being their own trial managers) and, hopefully, a more accurate perception of the risk/benefit balance involved.

Another radical proposal is the concept of ‘open-consent’ as currently applied within George Church’s Personal Genome Project (Church, 2005). Jeantine Lunshof, George Church and colleagues highlight in a recent review (Lunshof et al, 2008) the limitations of the current definitions of genetic privacy and confidentiality in view of the rapid advances in the fields of human genetics and personal genomics. In particular, the creation of large database interlinking individual genome-wide genotypes to extensive phenotypic profiles will make de-identification of such datasets increasingly difficult if not impossible (Lowrance and Collins, 2007). Under these conditions, it appears that the promise of absolute anonymity and confidentiality of private data is becoming unrealistic. Church and colleagues affirm that an ‘open-consent’ policy would avoid making such false promises and would therefore represent a more realistic way to formulate an adequately informed consent when accepting to participate to a human genomic research study.

At last month’s ESF Conference on Systems Biology, Hiroaki Kitano discussed the potential of multi-component, combinatorial therapies (see also Kitano, 2007). He introduced the tentative idea of an ‘Open Pharma’ strategy, which would attempt to exploit beneficial synergistic effects that may result from combined administration of cheap generic drugs. He envisions that this type of approach could ultimately lead the way to novel and hopefully more affordable therapeutic strategies, which would provide a potential alternative to the current single-target proprietary drug paradigm.

Observing the launch of Google Health within the context of this series of rather revolutionary proposals, it is tempting to imagine for a moment what would result from large-scale self-experimentation with multi-component generic drug cocktails combined with web-enabled data sharing under some form of open-consent… Will ‘Participative Open Pharma’ be our future?

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    Pedro Beltrao said:

    The potential for a service like Google Health or some other intermediary could also be the anonymous access to a pool of individuals with certain characteristics. In this way, people enrolled in these services could opt to provide their information (genetic/SNPs/history/habits) and maybe self-test (answer questions/take test or compound) without revealing their identity.

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    Attila Csordas said:

    The real turning point will be the joint forces of personal genomics services and Google Health:

    http://pimm.wordpress.com/2008/02/29/the-second-goal-of-23andme-using-customers-real-health-data-later-in-research/

    As Esther Dyson writes:

    To learn more, researchers need to collect thousands of genetic profiles – and the health data connected with each of them – to find correlations between the two. That leads to a second goal of 23andMe – to collect a large database of genetic information and then come back to you over time with invitations to provide specific health data and participate in research.

    We’re not asking you to do this for purely altruistic reasons – either on our part or on yours. We’re a profit-seeking company, even though our founders and employees – and directors! – all share the vision of better understanding of everyone’s genomic make-up. As for you, the research results your data help produce could translate directly into benefits for you, or at least for your children, grandchildren and friends.