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Lay understanding of cancer genetics activities in the UK

Lay understanding of cancer genetics activities in the UK
Lay understanding of cancer genetics activities in the UK
PURPOSE: This multidisciplinary project investigates healthcare professionals’, patients’ and regulators’/ stakeholders’ understandings of cancer genetics activities within the UK. It looks at how these groups conceive the research–clinical practice distinction, and aims to identify any perceived ambiguities, whether practical and/or ethical problems that are generated for the different actors. METHODS: Semi-structured interviews with healthcare professionals who are involved in cancer genetics research and/or provide a clinical cancer genetics service; patients attending cancer genetics clinics who are a cross-section of those involved in research (DNA e.g. Familial Breast Cancer Study and/or clinical studies e.g.: UKFOCSS, CAPP2), refused or not invited to participate in research and regulators who play a role in the regulation of clinical research or clinical practice. This paper reports data from the patient interviews (n ¼ 35). RESULTS: The data suggests that many patients fail to distinguish clinical care from research. Some perceive clinical services as research and vice versa. Many patients are unaware that they have been recruited to research protocols and fail to recall consent procedures in any detail. Research experienced relates to the variation reported in the understanding of research–clinical practice boundaries. While they feel informed consent is important and should be sought, they often report the associated procedures do not reflect the type of research they are involved with. CONCLUSIONS: As far as many patients are concerned, the research–clinic boundary within cancer genetics is ambiguous. The implications for informed consent and ways in which this could be better managed will be discussed.
265-265
Cooke, S
de6ba8be-f6bc-48ad-b713-0c0b1d59aeea
Lucassen, A
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Crawford, G
c49ec103-2936-4897-8f25-96abe25b3a9f
Parker, M
d012a2b8-d4f7-49c1-beca-d69705c2ee43
Hallowell, N
a0206c14-40c8-4bbe-9a57-65a74f6d3f7c
Cooke, S
de6ba8be-f6bc-48ad-b713-0c0b1d59aeea
Lucassen, A
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Crawford, G
c49ec103-2936-4897-8f25-96abe25b3a9f
Parker, M
d012a2b8-d4f7-49c1-beca-d69705c2ee43
Hallowell, N
a0206c14-40c8-4bbe-9a57-65a74f6d3f7c

Cooke, S, Lucassen, A, Crawford, G, Parker, M and Hallowell, N (2007) Lay understanding of cancer genetics activities in the UK. Psycho-Oncology, 16 (3), 265-265. (doi:10.1002/pon.1165).

Record type: Article

Abstract

PURPOSE: This multidisciplinary project investigates healthcare professionals’, patients’ and regulators’/ stakeholders’ understandings of cancer genetics activities within the UK. It looks at how these groups conceive the research–clinical practice distinction, and aims to identify any perceived ambiguities, whether practical and/or ethical problems that are generated for the different actors. METHODS: Semi-structured interviews with healthcare professionals who are involved in cancer genetics research and/or provide a clinical cancer genetics service; patients attending cancer genetics clinics who are a cross-section of those involved in research (DNA e.g. Familial Breast Cancer Study and/or clinical studies e.g.: UKFOCSS, CAPP2), refused or not invited to participate in research and regulators who play a role in the regulation of clinical research or clinical practice. This paper reports data from the patient interviews (n ¼ 35). RESULTS: The data suggests that many patients fail to distinguish clinical care from research. Some perceive clinical services as research and vice versa. Many patients are unaware that they have been recruited to research protocols and fail to recall consent procedures in any detail. Research experienced relates to the variation reported in the understanding of research–clinical practice boundaries. While they feel informed consent is important and should be sought, they often report the associated procedures do not reflect the type of research they are involved with. CONCLUSIONS: As far as many patients are concerned, the research–clinic boundary within cancer genetics is ambiguous. The implications for informed consent and ways in which this could be better managed will be discussed.

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Published date: 21 February 2007

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Local EPrints ID: 62709
URI: https://eprints.soton.ac.uk/id/eprint/62709
PURE UUID: a7637e12-c403-45db-bfe5-303c690f8959

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Date deposited: 10 Sep 2008
Last modified: 13 Mar 2019 20:27

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