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Savić, L.

Department of Ethics, Social an Political Philosophy

Genetic Imputation – Do We Need Informed Consent?

Genetic imputation represents a powerful and efficient statistical method for imputing missing values in genotype data sets. However, one of the main consequences of the use of imputation in population-based cohort studies is that geneticists are thereby granted a means to simultaneously infer genetic and other health-related information about a great number of individuals not enrolled into the study. In this paper I aim to answer two questions. First, does the fact that genetic imputation affects non-enrolled individuals give us plausible reasons to regard them as “research participants”? Second, does the status of “research participants” imply the requirement for obtaining informed consent from non-enrolled but affected individuals?

To answer these questions, I propose that we need to provide an adequate account of what it means to be a research participant. I provide a philosophical analysis of a number of intuitive and already endorsed accounts of research participation, and show that they are inadequate. Furthermore, I develop a more adequate Rights–Based View of research participation according to which individuals that have never enrolled in the study, but are affected by genetic imputation should count as proper research participants. However, contrary to the doctrine of informed consent, I argue that there is no need for obtaining informed consent from not-enrolled individuals, since (a) rights often represent pro tanto reasons for obtaining informed consent, and (b) pro tanto reasons can be overridden by other weightier pro tanto considerations such as social value of research, or common public good.

Last modified:09 October 2017 2.26 p.m.