Literature DB >> 33219499

Attitudes among South African university staff and students towards disclosing secondary genetic findings.

Georgina Spies1, Jolynne Mokaya2, Jacqui Steadman3, Nicole Schuitmaker3, Martin Kidd4, S M J Hemmings3, Jonathan A Carr5, Helena Kuivaniemi3,6, Soraya Seedat3.   

Abstract

The present study represents an initial step in understanding diverse academic perspectives on the disclosure of secondary findings (SFs) from genetic research conducted in Africa. Using an online survey completed by 674 university students and academic staff in South Africa, we elicited attitudes towards the return of SFs. Latent class analysis (LCA) was performed to classify sub-groups of participants according to their overall attitudes to returning SFs. We did not find substantial differences in attitudes towards the return of findings between staff and students. Overall, respondents were in favour of the return of SFs in genetics research, depending on the type. The majority of survey respondents (80%) indicated that research participants should be given the option of deciding whether to have genetic SFs returned. LCA revealed that the largest group (53%) comprised individuals with more favourable attitudes to the return of SFs in genetics research. Those with less favourable attitudes comprised only 4% of the sample. This study provides important insights that may, together with further empirical evidence, inform the development of research guidelines and policy to assist healthcare professionals and researchers.

Entities:  

Keywords:  Genetics; Return of results; Secondary findings; South Africa

Year:  2020        PMID: 33219499     DOI: 10.1007/s12687-020-00494-0

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  34 in total

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Authors:  Michael J Buck; Jason D Lieb
Journal:  Genomics       Date:  2004-03       Impact factor: 5.736

Review 2.  To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2012-06-27       Impact factor: 4.246

Review 3.  Disclosing incidental findings in genetics contexts: a review of the empirical ethical research.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Kris Dierickx
Journal:  Eur J Med Genet       Date:  2013-09-11       Impact factor: 2.708

Review 4.  Latent class analysis in medical research.

Authors:  A K Formann; T Kohlmann
Journal:  Stat Methods Med Res       Date:  1996-06       Impact factor: 3.021

5.  Diversity and inclusion in genomic research: why the uneven progress?

Authors:  Amy R Bentley; Shawneequa Callier; Charles N Rotimi
Journal:  J Community Genet       Date:  2017-07-18

6.  Choices of incidental findings of individuals undergoing genome wide sequencing, a single center's experience.

Authors:  C L Bishop; K A Strong; D P Dimmock
Journal:  Clin Genet       Date:  2016-07-26       Impact factor: 4.438

7.  The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists.

Authors:  Kym Boycott; Taila Hartley; Shelin Adam; Francois Bernier; Karen Chong; Bridget A Fernandez; Jan M Friedman; Michael T Geraghty; Stacey Hume; Bartha M Knoppers; Anne-Marie Laberge; Jacek Majewski; Roberto Mendoza-Londono; M Stephen Meyn; Jacques L Michaud; Tanya N Nelson; Julie Richer; Bekim Sadikovic; David L Skidmore; Tracy Stockley; Sherry Taylor; Clara van Karnebeek; Ma'n H Zawati; Julie Lauzon; Christine M Armour
Journal:  J Med Genet       Date:  2015-05-07       Impact factor: 6.318

Review 8.  Progress in Rare Diseases Research 2010-2016: An IRDiRC Perspective.

Authors:  Hugh J S Dawkins; Ruxandra Draghia-Akli; Paul Lasko; Lilian P L Lau; Anneliene H Jonker; Christine M Cutillo; Ana Rath; Kym M Boycott; Gareth Baynam; Hanns Lochmüller; Petra Kaufmann; Yann Le Cam; Virginie Hivert; Christopher P Austin
Journal:  Clin Transl Sci       Date:  2017-10-23       Impact factor: 4.689

9.  Informed consent for return of incidental findings in genomic research.

Authors:  Paul S Appelbaum; Cameron R Waldman; Abby Fyer; Robert Klitzman; Erik Parens; Josue Martinez; W Nicholson Price; Wendy K Chung
Journal:  Genet Med       Date:  2013-10-24       Impact factor: 8.822

10.  High-depth African genomes inform human migration and health.

Authors:  Ananyo Choudhury; Shaun Aron; Laura R Botigué; Dhriti Sengupta; Gerrit Botha; Taoufik Bensellak; Gordon Wells; Judit Kumuthini; Daniel Shriner; Yasmina J Fakim; Anisah W Ghoorah; Eileen Dareng; Trust Odia; Oluwadamilare Falola; Ezekiel Adebiyi; Scott Hazelhurst; Gaston Mazandu; Oscar A Nyangiri; Mamana Mbiyavanga; Alia Benkahla; Samar K Kassim; Nicola Mulder; Sally N Adebamowo; Emile R Chimusa; Donna Muzny; Ginger Metcalf; Richard A Gibbs; Charles Rotimi; Michèle Ramsay; Adebowale A Adeyemo; Zané Lombard; Neil A Hanchard
Journal:  Nature       Date:  2020-10-28       Impact factor: 69.504

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  1 in total

1.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

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

  1 in total

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