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Should families own genetic information? No

BMJ 2007; 335 doi: 10.1136/bmj.39252.392940.AD (Published 5 July 2007)
Cite this as: BMJ 2007;335:23

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  1. Angus Clarke, consultant clinical geneticist
  1. Institute of Medical Genetics, University Hospital of Wales, Heath Park, Cardiff CF14 4XN, Wales UK
  1. clarkeaj{at}cardiff.ac.uk

    We all share our genetic make up with relatives, and Anneke Lucassen argues that we should also share ownership of the results of DNA analysis. Angus Clarke believes, however, that in most cases the knowledge can be considered private

    Although genes will often be shared within a family, most specific items of genetic information will have been generated by examining or testing an individual. Such information will, inevitably, belong more strongly to that person than to his or her relatives. To claim that the information belongs to the family is to miss the point. In current practice, to make that claim asks the question that the test would usually be setting out to answer: is mutation M that is found in person P also present in relative, R? If it is present in R, then P and R share the particular genetic variant; otherwise they do not.

    There are occasions when genetic information does belong intrinsically to the family. For example, in a genetic linkage study looking at the pattern of sharing of DNA sequences among family members, the results are meaningful only when the family is …

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