The Communication of Pharmacogenetic Research Results: Participants Weigh in on Their Informational Needs in a Pilot Study

In this brief investigation, the informational needs of research participants [n = 62; mothers who had breastfed, taken codeine, and participated in a pharmacogenetic study] were probed during a counselling session in which they received their CYP2D6 pharmacogenetic research results and overall study results. In addition to the standard information, developed by a multidisciplinary team and provided to the participants, 38% of individuals had further questions related to potential adverse effects in babies, future codeine or medication use, heredity, and consequences for policies and programmes. The diversity and complexity of the questions raised support the need to communicate the results in the context of personalized genetic counselling information sessions.

Author(s): Parvaz Madadi, Yann Joly, Denise Avard, David C Chitayat, M Anne Smith, Colin J D Ross, Bruce C Carleton, Michael R Hayden, Gideon Koren