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Clinical Sarcoma Research
Published in: Clinical Sarcoma Research 1/2013

Open Access 01-12-2013 | Research

The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research

Authors: Mary-Anne Young, Amy Herlihy, Gillian Mitchell, David M Thomas, Mandy Ballinger, Kathy Tucker, Craig R Lewis, Susan Neuhaus, Jane Halliday, International Sarcoma Kindred Study

Published in: Clinical Sarcoma Research | Issue 1/2013

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Abstract

Purpose

The study aimed to examine attitudes of individuals diagnosed with sarcoma and their family members towards genetics, genomic research and incidental information arising as a result of participating in genetic research.

Methods

A questionnaire was administered to 1200 individuals from the International Sarcoma Kindred Study (ISKS). Respondents were divided into three groups: individuals affected with sarcoma (probands), their spouses and family members.

Results

Approximately half of all research participants felt positively towards new discoveries in human genetics. Overall, more were positive in their attitudes towards genetic testing for inherited conditions (60%) but family members were less so. Older participants reported more highly positive attitudes more often than younger participants. Males were less likely to feel positive about new genetic discoveries and more likely to believe they could modify genetic risk by altering lifestyle factors. Almost all ISKS participants believed participants would like to be given ancillary information arising as a result of participating in genetic research.

Conclusions

The only difference between the study groups was the decreased likelihood of family members being highly positive about genetic testing. This may be important if predictive testing for sarcoma becomes available. Generally ISKS research participants supported the notion of returning incidental genetic information to research participants.
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Metadata
Title
The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research
Authors
Mary-Anne Young
Amy Herlihy
Gillian Mitchell
David M Thomas
Mandy Ballinger
Kathy Tucker
Craig R Lewis
Susan Neuhaus
Jane Halliday
International Sarcoma Kindred Study
Publication date
01-12-2013
Publisher
BioMed Central
Published in
Clinical Sarcoma Research / Issue 1/2013
Electronic ISSN: 2045-3329
DOI
https://doi.org/10.1186/2045-3329-3-11

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