Mothers and daughters from breast cancer families: a qualitative study of their perceptions of risks and benefits associated with minor's participation in genetic susceptibility research.

Gail Geller, E. S. Tambor, B. A. Bernhardt, Lawrence S Wissow, G. Fraser

Research output: Contribution to journalArticle

Abstract

OBJECTIVES: To determine: 1) the views of daughters at increased risk of developing breast cancer regarding the benefits and risks of participating in genetic susceptibility research; 2) mothers' views about enrolling their daughters in genetic susceptibility research; and 3) any important areas of agreement and disagreement between mothers and daughters in their assessment of risks and benefits. METHODS: We conducted separate interviews of mothers and daughters from 12 breast cancer families recruited primarily through the Breast Center at Johns Hopkins University. Daughters were between the ages of 10 and 17. Interviews were transcribed and coded and analyzed qualitatively. RESULTS: We observed that mothers and daughters had a range of reactions to the prospect of enrolling children and adolescents in genetic susceptibility research, that perceptions of benefits and risks were fairly concordant between mothers and daughters, and that daughters initially identified no risks of participating, but their perceptions of the risks and benefits of genetic susceptibility research evolved over the course of conversation. CONCLUSION: These findings underscore the view that informed consent ought to be a "process" rather than a single event, and that children's first reactions to the prospect of participating in genetic testing research should not be taken as evidence that they have adequately considered the risks and benefits of participation.

Original languageEnglish (US)
JournalJournal of the American Medical Women's Association
Volume55
Issue number5
StatePublished - 2000

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Minors
Genetic Research
Genetic Predisposition to Disease
Nuclear Family
Mothers
Breast Neoplasms
Interviews
Genetic Testing
Informed Consent
Breast

Cite this

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title = "Mothers and daughters from breast cancer families: a qualitative study of their perceptions of risks and benefits associated with minor's participation in genetic susceptibility research.",
abstract = "OBJECTIVES: To determine: 1) the views of daughters at increased risk of developing breast cancer regarding the benefits and risks of participating in genetic susceptibility research; 2) mothers' views about enrolling their daughters in genetic susceptibility research; and 3) any important areas of agreement and disagreement between mothers and daughters in their assessment of risks and benefits. METHODS: We conducted separate interviews of mothers and daughters from 12 breast cancer families recruited primarily through the Breast Center at Johns Hopkins University. Daughters were between the ages of 10 and 17. Interviews were transcribed and coded and analyzed qualitatively. RESULTS: We observed that mothers and daughters had a range of reactions to the prospect of enrolling children and adolescents in genetic susceptibility research, that perceptions of benefits and risks were fairly concordant between mothers and daughters, and that daughters initially identified no risks of participating, but their perceptions of the risks and benefits of genetic susceptibility research evolved over the course of conversation. CONCLUSION: These findings underscore the view that informed consent ought to be a {"}process{"} rather than a single event, and that children's first reactions to the prospect of participating in genetic testing research should not be taken as evidence that they have adequately considered the risks and benefits of participation.",
author = "Gail Geller and Tambor, {E. S.} and Bernhardt, {B. A.} and Wissow, {Lawrence S} and G. Fraser",
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journal = "Journal of the American Medical Women's Association",
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T1 - Mothers and daughters from breast cancer families

T2 - a qualitative study of their perceptions of risks and benefits associated with minor's participation in genetic susceptibility research.

AU - Geller, Gail

AU - Tambor, E. S.

AU - Bernhardt, B. A.

AU - Wissow, Lawrence S

AU - Fraser, G.

PY - 2000

Y1 - 2000

N2 - OBJECTIVES: To determine: 1) the views of daughters at increased risk of developing breast cancer regarding the benefits and risks of participating in genetic susceptibility research; 2) mothers' views about enrolling their daughters in genetic susceptibility research; and 3) any important areas of agreement and disagreement between mothers and daughters in their assessment of risks and benefits. METHODS: We conducted separate interviews of mothers and daughters from 12 breast cancer families recruited primarily through the Breast Center at Johns Hopkins University. Daughters were between the ages of 10 and 17. Interviews were transcribed and coded and analyzed qualitatively. RESULTS: We observed that mothers and daughters had a range of reactions to the prospect of enrolling children and adolescents in genetic susceptibility research, that perceptions of benefits and risks were fairly concordant between mothers and daughters, and that daughters initially identified no risks of participating, but their perceptions of the risks and benefits of genetic susceptibility research evolved over the course of conversation. CONCLUSION: These findings underscore the view that informed consent ought to be a "process" rather than a single event, and that children's first reactions to the prospect of participating in genetic testing research should not be taken as evidence that they have adequately considered the risks and benefits of participation.

AB - OBJECTIVES: To determine: 1) the views of daughters at increased risk of developing breast cancer regarding the benefits and risks of participating in genetic susceptibility research; 2) mothers' views about enrolling their daughters in genetic susceptibility research; and 3) any important areas of agreement and disagreement between mothers and daughters in their assessment of risks and benefits. METHODS: We conducted separate interviews of mothers and daughters from 12 breast cancer families recruited primarily through the Breast Center at Johns Hopkins University. Daughters were between the ages of 10 and 17. Interviews were transcribed and coded and analyzed qualitatively. RESULTS: We observed that mothers and daughters had a range of reactions to the prospect of enrolling children and adolescents in genetic susceptibility research, that perceptions of benefits and risks were fairly concordant between mothers and daughters, and that daughters initially identified no risks of participating, but their perceptions of the risks and benefits of genetic susceptibility research evolved over the course of conversation. CONCLUSION: These findings underscore the view that informed consent ought to be a "process" rather than a single event, and that children's first reactions to the prospect of participating in genetic testing research should not be taken as evidence that they have adequately considered the risks and benefits of participation.

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