Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia
Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered “exceptional” and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There...
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2006
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rr-article-94748032006-01-01T00:00:00Z Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia Paula Saukko (1254435) Suzanne H. Richards (7188797) Maggie H. Shepherd (7188800) John L. Campbell (5180906) Other human society not elsewhere classified Other language, communication and culture not elsewhere classified Thrombophilia Deep vein thrombosis Patient perceptions UK Language, Communication and Culture not elsewhere classified Studies in Human Society not elsewhere classified Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered “exceptional” and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with 42 participants who had undergone testing in the South West of England for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants, who were mostly women, thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle. Many considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or “in depth” knowledge about one's health and identity but as occasionally relevant surface information, which participants use to make specific health decisions but not to transform their everyday lives. However, the views of the subgroup indicate that some participants interpret thrombophilia as serious and/or need special support. 2006-01-01T00:00:00Z Text Journal contribution 2134/5637 https://figshare.com/articles/journal_contribution/Are_genetic_tests_exceptional_Lessons_from_a_qualitative_study_on_thrombophilia/9474803 CC BY-NC-ND 4.0 |
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Other human society not elsewhere classified Other language, communication and culture not elsewhere classified Thrombophilia Deep vein thrombosis Patient perceptions UK Language, Communication and Culture not elsewhere classified Studies in Human Society not elsewhere classified |
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Other human society not elsewhere classified Other language, communication and culture not elsewhere classified Thrombophilia Deep vein thrombosis Patient perceptions UK Language, Communication and Culture not elsewhere classified Studies in Human Society not elsewhere classified Paula Saukko Suzanne H. Richards Maggie H. Shepherd John L. Campbell Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia |
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Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered “exceptional” and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with 42 participants who had undergone testing in the South West of England for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants, who were mostly women, thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle. Many considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or “in depth” knowledge about one's health and identity but as occasionally relevant surface information, which participants use to make specific health decisions but not to transform their everyday lives. However, the views of the subgroup indicate that some participants interpret thrombophilia as serious and/or need special support. |
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Default Article |
| author |
Paula Saukko Suzanne H. Richards Maggie H. Shepherd John L. Campbell |
| author_facet |
Paula Saukko Suzanne H. Richards Maggie H. Shepherd John L. Campbell |
| author_sort |
Paula Saukko (1254435) |
| title |
Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia |
| title_short |
Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia |
| title_full |
Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia |
| title_fullStr |
Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia |
| title_full_unstemmed |
Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia |
| title_sort |
are genetic tests exceptional? lessons from a qualitative study on thrombophilia |
| publishDate |
2006 |
| url |
https://hdl.handle.net/2134/5637 |
| _version_ |
1797739802417692672 |