The Needle in the Haystack: International Consortia and the Return of Individual Research Results

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See Hall , supra note 7, at S40.

Id., at S42.

See ICGC, supra note 29, at 5.

Unpublished data.

Projects were told that the results from the survey would be anonymized.

The definition of clinically significance for each individual project is not available; the ICGC survey did not ask for further details on the criteria used by each project to determine this.

See Dressler , supra note 15.

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The UK10K study defines “clinically significant” as “…those variants that contribute to the current disease status or alter assessment of the future disease risk of the research participant.” See UK10K, supra note 38, at 8.

Id., at 12.

See Wallace Kent supra note 9; McCarty , supra note 2 7.

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