PURPOSE: The generation of clinically significant genetic data during research studies raises a number of ethical issues about the feedback of this information to research participants. Little is known about research participants' experiences of this practice. METHODS: This qualitative interview study investigated research participants' (n = 10) or their nominated next of kin's (relatives) (n = 15) experiences of receiving BRCA1 and BRCA2 genetic test information following participation in the Australian Ovarian Cancer Study. RESULTS: Interviewees had mixed responses to receiving feedback. The participants of the Australian Ovarian Cancer Study were more positive about receiving feedback, acknowledging that the genetic information may be useful for their kin. Relatives frequently described themselves as initially distressed at receiving feedback, particularly those who were unaware of the participation of their mothers in the Australian Ovarian Cancer Study. The participants of the Australian Ovarian Cancer Study and their relatives expressed an intention to disseminate the information to relatives following confirmation of the result. CONCLUSION: We suggest that research participants be encouraged to discuss their participation with family members from the outset. We also outline a number of different strategies for providing feedback to research participants and their next of kin that may lessen the immediate negative impact of receiving feedback of research results.
PURPOSE: The generation of clinically significant genetic data during research studies raises a number of ethical issues about the feedback of this information to research participants. Little is known about research participants' experiences of this practice. METHODS: This qualitative interview study investigated research participants' (n = 10) or their nominated next of kin's (relatives) (n = 15) experiences of receiving BRCA1 and BRCA2 genetic test information following participation in the Australian Ovarian Cancer Study. RESULTS: Interviewees had mixed responses to receiving feedback. The participants of the Australian Ovarian Cancer Study were more positive about receiving feedback, acknowledging that the genetic information may be useful for their kin. Relatives frequently described themselves as initially distressed at receiving feedback, particularly those who were unaware of the participation of their mothers in the Australian Ovarian Cancer Study. The participants of the Australian Ovarian Cancer Study and their relatives expressed an intention to disseminate the information to relatives following confirmation of the result. CONCLUSION: We suggest that research participants be encouraged to discuss their participation with family members from the outset. We also outline a number of different strategies for providing feedback to research participants and their next of kin that may lessen the immediate negative impact of receiving feedback of research results.
Authors: Carmen Radecki Breitkopf; Susan M Wolf; Kari G Chaffee; Marguerite E Robinson; Noralane M Lindor; Deborah R Gordon; Barbara A Koenig; Gloria M Petersen Journal: J Empir Res Hum Res Ethics Date: 2018-04-27 Impact factor: 1.742
Authors: Kate A McBride; Nina Hallowell; Martin H N Tattersall; Judy Kirk; Mandy L Ballinger; David M Thomas; Gillian Mitchell; Mary-Anne Young Journal: J Community Genet Date: 2015-05-26
Authors: Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh Journal: PLoS One Date: 2021-11-08 Impact factor: 3.240
Authors: Amanda M Willis; Sian K Smith; Bettina Meiser; Mandy L Ballinger; David M Thomas; Martin Tattersall; Mary-Anne Young Journal: J Genet Couns Date: 2018-02-17 Impact factor: 2.537
Authors: Deborah R Gordon; Carmen Radecki Breitkopf; Marguerite Robinson; Wesley O Petersen; Jason S Egginton; Kari G Chaffee; Gloria M Petersen; Susan M Wolf; Barbara A Koenig Journal: AJOB Empir Bioeth Date: 2018-12-31
Authors: Rachel Delahunty; Linh Nguyen; Stuart Craig; Belinda Creighton; Dinuka Ariyaratne; Dale W Garsed; Elizabeth Christie; Sian Fereday; Lesley Andrews; Alexandra Lewis; Sharne Limb; Ahwan Pandey; Joy Hendley; Nadia Traficante; Natalia Carvajal; Amanda B Spurdle; Bryony Thompson; Michael T Parsons; Victoria Beshay; Mila Volcheck; Timothy Semple; Richard Lupat; Kenneth Doig; Jiaan Yu; Xiao Qing Chen; Anna Marsh; Christopher Love; Sanela Bilic; Maria Beilin; Cassandra B Nichols; Christina Greer; Yeh Chen Lee; Susan Gerty; Lynette Gill; Emma Newton; Julie Howard; Rachel Williams; Christie Norris; Andrew N Stephens; Erin Tutty; Courtney Smyth; Shona O'Connell; Thomas Jobling; Colin J R Stewart; Adeline Tan; Stephen B Fox; Nicholas Pachter; Jason Li; Jason Ellul; Gisela Mir Arnau; Mary-Anne Young; Louisa Gordon; Laura Forrest; Marion Harris; Karen Livingstone; Jane Hill; Georgia Chenevix-Trench; Paul A Cohen; Penelope M Webb; Michael Friedlander; Paul James; David Bowtell; Kathryn Alsop Journal: J Clin Oncol Date: 2022-03-09 Impact factor: 50.717