This is a guest post by Barbara Prainsack.
Barbara Prainsack is a Professor at the Department of Social Science, Health & Medicine at King’s College London. She has published widely on social, ethical and regulatory issues related to genomic research and medicine. A book (with Alena Buyx) on Solidarity in Biomedicine and Beyond, which includes a case study on database governance, will be published by Cambridge University Press next year. Barbara is in the process of finalising a monograph on Personalization from Below: Participatory Medicine in the 21st Century (under contract with New York University Press).
A lot of people who promote data sharing – including the people behind DNAdigest – are doing great things; they devote their time to finding ways to utilise and re-use data in ways that promote disease research, advance knowledge, and create public benefits. The people behind these initiatives, and those who contribute their own data to them (see for example DNAland, OpenSNP, Genes for Good which are all initiatives aiming at data sharing for public benefit) are pioneers in creating social value.
At the same time, some of the voices in the choir of those who call for data sharing belong to commercial companies. Their calls for greater levels of sharing are not directed towards other companies or institutions, which would help to address the notorious problem of data silos, but they are often directed at citizens. Come on, patients – so the message goes – don’t be selfish! Be part of the community of data sharers! Sharing makes you a better person. Sharing shows that you think of others. As the protagonists of Dave Eggers’ novel The Circle had it, Sharing is Caring.
But is it? Clearly, it can be. That research institutions, hospitals, and companies don’t give others access to their data regularly leads to a waste of resources, duplication of work, and to the failure to obtain potentially life changing (or even life saving) insights. Sometimes institutions want to make their data available to others but are not allowed to, because of ethical, legal, technical, or administrative barriers; this is one of the very problems that DNAdigest seeks to address. But when it comes to calls upon citizens to “share” more of their data with organisations, sometimes the most caring and ethical thing is not to guilt-trip them into doing it. As the debacle around the care.data initiative in England has illustrated, people who are reluctant to hand over their data are typically not just selfish data-hoarders, but they may have good reasons not to trust that institutions will handle their information in a way that won’t harm them, or hand them over to commercial companies.
What can we do about this? One step in the right direction would be to stop using the term “sharing” when we speak of data. At present, a wide range of very diverse activities – from research institutions making interpreted results of genomic research available to participants, to individual patients posting information about their disease online, to customers of online companies allowing the latter to use information on how they use their services are all lumped together under “data sharing”. If, instead of using the broad label of “sharing”, we talked about “making data/information accessible” to somebody for a specific purpose, this would serve two purposes at once: First, it would avoid the moralistic undertone of the term “sharing” and thus the implication that those who oppose certain ways of exchanging, collecting, or using data have dubious motives. Second, it force us to be very specific about who is giving access to whom for what purpose: Are we talking about individual people making health-related or other information about themselves available to organisations? Or are we talking about organisations exchanging data about individuals? What information is it that is being exchanged or made available, and for what purpose is this done? Is it done for biomedical research, for criminal investigation, or to increase profit margins?
This would be a start to enabling us to differentiate between “good” ways of data sharing that are driven by solidarity and the aim to increase the public good, and calls for data sharing that see patients and citizens as little more than data sources that hand over their information for the benefit of shareholders, or other aims that are not necessarily in the public interest. It would ensure that our well-meant efforts to support knowledge creation for common benefit does not end up being used for purposes that are not in the interest of the people who contribute their data.
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