THE COMMUNICATION OF PHARMACOGENETIC RESEARCH RESULTS: PARTICIPANTS WEIGH IN ON THEIR INFORMATIONAL NEEDS IN A PILOT STUDY

Main Article Content

Parvaz Madadi
Yann Joly
Denise Avard
David C Chitayat
M Anne Smith
Colin JD Ross
Bruce C Carleton
Michael R Hayden
Gideon Koren

Keywords

Pharmacogenetics, research results, communication, codeine, CYP2D6

Abstract

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.

Abstract 187 | PDF Downloads 44

References

1. Fernandez CV, Kodish E, Weijer C. Informing study participants of research results: an ethical imperative. I.R.B.2003;25:12-19.
2. Miller FA, Christensen R, GiacominiM, Robert JS. Duty to disclose what? Querying the putative obligation to return research results to participants. J Med Ethics 2008;34,210-213 (2008).
3. Joly Y, Knoppers BM, Nguyen MT. Stored tissue samples: through the confidentiality maze. Pharmacogenomics J 2005;5(1):2-5.
4. Di Prospero LS, et al. Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: findings from a focus group and a needs-assessment survey. CMAJ 2001; 64:1005-9.
5. Hayden MR, Bombard Y. Psychosocial effects of predictive testing for Huntington's disease. Adv Neurol 2005;96:226-39.
6. Madadi P, Ross CJ, Hayden MR, Carleton BC, Gaedigk A, Leeder JS, Koren G. Pharmacogenetics of neonatal opioid toxicity following maternal use of codeine during breastfeeding: a case-control study. Clin Pharmacol Ther 2009 Jan;85(1):31-5.
7. Madadi P, Joly Y, Avard D, Chitayat DC, Smith MA, Ross CJ, Carleton BC, Hayden MR, Koren G. Communicating pharmacogenetic research results to breastfeeding mothers taking codeine: a pilot study of perceptions and benefits. Clin Pharmacol Ther 2010 Dec;88(6):792-5.
8. Priest L. MDs want codeine banned at hospital. The Globe and Mail. August 22, 2008 Page 1. [newspaper article]
9. Priest L. Codeine can prove toxic for breastfed babies. The Globe and Mail August 21, 2008 Page 1. [newspaper article]
10. Priest L. Codeine can turn toxic in nursing mothers. The Globe and Mail May 10, 2006; Page 1. [newspaper article]
11. Fernandez CV, et al. The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer. Pediatr. Blood Cancer 2007;48, 441-446.

Most read articles by the same author(s)

1 2 3 4 5 6 7 8 9 10 > >>