Raw Data: Access to Inaccuracy

Abstract

In “Raw personal data: providing access” (Policy Forum, 24 January, p. [373][1]), J. E. Lunshof and colleagues argue that donors should have access to raw data derived from their contribution to research or clinical repositories. Fairness, reciprocity, and respect for autonomy are compelling ethical reasons for access, if not for one major problem: the intrinsic inaccuracy of most research data. Even the best-documented population studies cannot guarantee accurate data for individual participants. Limited research budgets force researchers to decide between assessing a few variables at high quality or many variables at lower quality, and they typically choose the latter. More data means more research opportunities, and suboptimal data quality is perfect enough when conclusions are drawn for populations at large. Yet, the data cannot be used to inform about individual participants. ![Figure][2] CREDIT: T. POPOVA/ISTOCKPHOTO To illustrate the moral obligation for granting access, the authors draw an excellent analogy with money banks, but the example actually undercuts their point. Money banks would never provide customers access to their bank accounts if they had even the slightest doubt about the accuracy of the balances. Inaccurate account data not only harm individual customers, who then remain uncertain about their financial position, but also destroy public trust in money banks. This is a risk that banks would not even think of taking, and scientists should not either. High-quality online genome data interpretation tools, health professionals, and other independent experts cannot make sense of data when they cannot rely on the quality. A disclaimer concerning data accuracy, as the authors propose, does not solve that problem. If researchers respect their participants, take them seriously, and want to do more good than harm ([ 1 ][3]), they do not give them all they have, but give something valuable in a responsible way ([ 2 ][4]). And that is not merely access to data. 1. [↵][5] The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Ethical Principles and Guidelines for the Protection of Human Subjects of Research (1979); [www.hhs.gov/ohrp/humansubjects/guidance/belmont.html][6]. 2. [↵][7] 1. J. P. Evans, 2. B. B. Rothschild , Genet. Med. 14, 358 (2012). [OpenUrl][8][CrossRef][9][PubMed][10] [1]: /lookup/doi/10.1126/science.1249382 [2]: pending:yes [3]: #ref-1 [4]: #ref-2 [5]: #xref-ref-1-1 View reference 1 in text [6]: http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html [7]: #xref-ref-2-1 View reference 2 in text [8]: {openurl}?query=rft.jtitle%253DGenetics%2Bin%2Bmedicine%2B%253A%2B%2Bofficial%2Bjournal%2Bof%2Bthe%2BAmerican%2BCollege%2Bof%2BMedical%2BGenetics%26rft.stitle%253DGenet%2BMed%26rft.aulast%253DEvans%26rft.auinit1%253DJ.%2BP.%26rft.volume%253D14%26rft.issue%253D4%26rft.spage%253D358%26rft.epage%253D360%26rft.atitle%253DReturn%2Bof%2Bresults%253A%2Bnot%2Bthat%2Bcomplicated%253F%26rft_id%253Dinfo%253Adoi%252F10.1038%252Fgim.2012.8%26rft_id%253Dinfo%253Apmid%252F22481183%26rft.genre%253Darticle%26rft_val_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Ajournal%26ctx_ver%253DZ39.88-2004%26url_ver%253DZ39.88-2004%26url_ctx_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Actx [9]: /lookup/external-ref?access_num=10.1038/gim.2012.8&link_type=DOI [10]: /lookup/external-ref?access_num=22481183&link_type=MED&atom=%2Fsci%2F343%2F6174%2F968.1.atom