Raw Data: Research and Health Care Goals Differ

In their Policy Forum “Raw personal data: Providing access” (24 January, p. [373][1]), J. E. Lunshof et al. suggest that more should be done to enable persons who had their genome sequenced, either as research subjects or as patients, to actively access their raw data. They argue that routinely providing them with personal access codes to those data would be a matter of transparency and respect for autonomy. We think Lunshof et al. underestimate the dangers of actively handing out data that we know are not fully reliable and can lead to misinterpretation. In our view, the proposed policy would be at odds with the responsibility of health professionals. In health care, clinical utility should have priority over social utility. An appeal to reciprocity between donors and users of genomic data does not change this argument. Patients are not the same as data donors. If patients become data donors by consenting to have their data stored in research registries, they should be aware that they have entered a different relationship, in which they primarily contribute to the benefit of future patients. Lunshof et al. ignore the crucial difference between health care and research when they criticize the recent recommendations of the European Society of Human Genetics (ESHG). To avoid the unnecessary generation of incidental findings, these recommendations advise the use of targeted forms of testing if that is sufficient to address the patient's problem ([ 1 ][2]). According to Lunshof et al. , this is problematic as it “systematically precludes the possible discovery of complex genetic causation.” We disagree: Discovery is the aim of research, not of health care. Conflating these aims risks turning patients into research subjects without their consent. 1. [↵][3] 1. C. G. van El 2. et al ., Eur. J. Hum. Genet. 21, 580 (2013). [OpenUrl][4][PubMed][5] 2. The authors are writing on behalf of the ESHG Public and Professional Policy Committee. [1]: /lookup/doi/10.1126/science.1249382 [2]: #ref-1 [3]: #xref-ref-1-1 "View reference 1 in text" [4]: {openurl}?query=rft.jtitle%253DEur.%2BJ.%2BHum.%2BGenet.%26rft.volume%253D21%26rft.spage%253D580%26rft_id%253Dinfo%253Apmid%252F23676617%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 [5]: /lookup/external-ref?access_num=23676617&link_type=MED&atom=%2Fsci%2F343%2F6174%2F968.2.atom