Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia.

2.50
Hdl Handle:
http://hdl.handle.net/11287/619271
Title:
Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia.
Authors:
Saukko, P. M.; Richards, S. H.; Shepherd, Maggie ( 0000-0003-2660-0955 ) ; Campbell, John L.
Abstract:
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.
Citation:
Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia. 2006, 63 (7):1947-59 Soc Sci Med
Publisher:
Elsevier
Journal:
Social science & medicine (1982)
Issue Date:
Oct-2006
URI:
http://hdl.handle.net/11287/619271
DOI:
10.1016/j.socscimed.2006.04.012
PubMed ID:
16753245
Additional Links:
http://www.sciencedirect.com/science/article/pii/S0277953606002115
Note:
RD&E staff can access the full-text of this article via OpenAthens. Click on the 'Additional Link' above to access the full-text and log in with NHS OpenAthens if prompted.
Type:
Research Support, Non-U.S. Gov't
Language:
en
ISSN:
0277-9536
Appears in Collections:
pre-2014 RD&E publications; Clinical Genetics (Peninsula Genetics); Honorary contracts publications

Full metadata record

DC FieldValue Language
dc.contributor.authorSaukko, P. M.en
dc.contributor.authorRichards, S. H.en
dc.contributor.authorShepherd, Maggieen
dc.contributor.authorCampbell, John L.en
dc.date.accessioned2016-09-02T10:18:05Z-
dc.date.available2016-09-02T10:18:05Z-
dc.date.issued2006-10-
dc.identifier.citationAre genetic tests exceptional? Lessons from a qualitative study on thrombophilia. 2006, 63 (7):1947-59 Soc Sci Meden
dc.identifier.issn0277-9536-
dc.identifier.pmid16753245-
dc.identifier.doi10.1016/j.socscimed.2006.04.012-
dc.identifier.urihttp://hdl.handle.net/11287/619271-
dc.description.abstractPolicy 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.en
dc.language.isoenen
dc.publisherElsevieren
dc.relation.urlhttp://www.sciencedirect.com/science/article/pii/S0277953606002115en
dc.rightsArchived with thanks to Social science & medicine (1982)en
dc.subjectWessex Classification Subject Headings::Oncology. Pathology.::Geneticsen
dc.titleAre genetic tests exceptional? Lessons from a qualitative study on thrombophilia.en
dc.typeResearch Support, Non-U.S. Gov'ten
dc.identifier.journalSocial science & medicine (1982)en
dc.description.noteRD&E staff can access the full-text of this article via OpenAthens. Click on the 'Additional Link' above to access the full-text and log in with NHS OpenAthens if prompted.en
dc.type.versionPublisheden
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