Ignoring alternatives:
Sharing data without interpretation

The editors of the Lancet declined to publish the following letter, a response to Middleton et al.’s “No expectation to share incidental findings in genomic research”, published online in the Lancet on December 16, 2014.

This response has four authors (see below). To facilitate citation it is also available via Figshare, where it has the DOI: http://dx.doi.org/10.6084/m9.figshare.1305696

To the editors:

Middleton et al. surveyed 6,944 individuals online regarding incidental findings (IFs) in genome research [1]. We very much welcome their work, and this study has produced important results. We are, however, concerned about the usage of the word ‘share’ in the title: “No expectation to share incidental findings in genomic research”. This could be seen to suggest that survey respondents did not support making IFs available to participants. Results actually showed that 88% of respondents did support this. The study also found that 51% did not believe “researchers should actively search” for IFs. Although an ‘active search’ seems at odds with the word ‘incidental’, a more accurate title might be: “No expectation to seek out incidental findings in genomic research”.

More importantly, the title implicitly conflates all acts of information sharing with the onerous ‘active search’ (interpretation) required for producing so-called ‘incidental findings’ from genome data. This perpetuates an ‘interpreted information-vs.-nothing’ dichotomy that ignores an alternative approach: participants’ access to existing raw genome data, without interpretation [2]. Research participants may want raw data, interpretation, and/or rights to share these with others. Conflating these notions fails to recognize important differences between them in terms of costs/benefits, and risks overlooking options that maximize benefits for both participants and researchers.

Madeleine P Ball, Ph.D.
PersonalGenomes.org, Boston, MA USA; Department of Genetics, Harvard Medical School, Boston, MA, USA
Nils Hoppe, Ph.D., LL.B.
Centre for Ethics and Law in the Life Sciences, Leibniz Universitaet Hannover, Hannover, Germany; Core Facility Quality Management and Health Technology Assessment in Transplantation, Hannover Medical School, Hannover, Germany
Jeantine E Lunshof, Ph.D.
Department of Genetics, University Medical Centre Groningen (UMCG), Groningen, Netherlands; Department of Genetics, Harvard Medical School, Boston, MA, USA
Barbara Prainsack, Ph.D.
Department of Social Science, Health & Medicine, King’s College London, UK

This document is shared with a Creative Commons Attribution 4.0 License (CC BY 4.0), full text available at http://creativecommons.org/licenses/by/4.0/

[1] Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME, Wright CF, Parker M. “No expectation to share incidental findings in genomic research.” The Lancet [online first: 17 December 2014, http://dx.doi.org/10.1016/S0140-6736(14)62119-X]
[2] Lunshof JE, Church GM, Prainsack B. “Raw personal data: providing access.” Science 343(6169), 373–374. DOI: http://dx.doi.org/10.1126/science.1249382

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