Contrasting the ethical perspectives of biospecimen research among individuals with familial risk for hereditary cancer and biomedical researchers

Implications for researcher training

Gwendolyn P. Quinn, Alexis Koskan, Ivana Sehovic, Tuya Pal, Cathy Meade, Clement K. Gwede

Research output: Contribution to journalArticle

2 Citations (Scopus)

Abstract

While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.

Original languageEnglish (US)
Pages (from-to)467-473
Number of pages7
JournalGenetic Testing and Molecular Biomarkers
Volume18
Issue number7
DOIs
StatePublished - Jul 1 2014
Externally publishedYes

Fingerprint

Research Personnel
Focus Groups
Research
Neoplasms
Informed Consent
Computer Security
Insurance Carriers
Incidental Findings
Privacy
Confidentiality
Genetic Association Studies
Telephone
Outcome Assessment (Health Care)
Mutation
Health

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Contrasting the ethical perspectives of biospecimen research among individuals with familial risk for hereditary cancer and biomedical researchers : Implications for researcher training. / Quinn, Gwendolyn P.; Koskan, Alexis; Sehovic, Ivana; Pal, Tuya; Meade, Cathy; Gwede, Clement K.

In: Genetic Testing and Molecular Biomarkers, Vol. 18, No. 7, 01.07.2014, p. 467-473.

Research output: Contribution to journalArticle

@article{4ab6511064504d309fa18fbdb0bec1af,
title = "Contrasting the ethical perspectives of biospecimen research among individuals with familial risk for hereditary cancer and biomedical researchers: Implications for researcher training",
abstract = "While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.",
author = "Quinn, {Gwendolyn P.} and Alexis Koskan and Ivana Sehovic and Tuya Pal and Cathy Meade and Gwede, {Clement K.}",
year = "2014",
month = "7",
day = "1",
doi = "10.1089/gtmb.2013.0461",
language = "English (US)",
volume = "18",
pages = "467--473",
journal = "Genetic Testing and Molecular Biomarkers",
issn = "1945-0265",
publisher = "Mary Ann Liebert Inc.",
number = "7",

}

TY - JOUR

T1 - Contrasting the ethical perspectives of biospecimen research among individuals with familial risk for hereditary cancer and biomedical researchers

T2 - Implications for researcher training

AU - Quinn, Gwendolyn P.

AU - Koskan, Alexis

AU - Sehovic, Ivana

AU - Pal, Tuya

AU - Meade, Cathy

AU - Gwede, Clement K.

PY - 2014/7/1

Y1 - 2014/7/1

N2 - While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.

AB - While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.

UR - http://www.scopus.com/inward/record.url?scp=84904343459&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84904343459&partnerID=8YFLogxK

U2 - 10.1089/gtmb.2013.0461

DO - 10.1089/gtmb.2013.0461

M3 - Article

VL - 18

SP - 467

EP - 473

JO - Genetic Testing and Molecular Biomarkers

JF - Genetic Testing and Molecular Biomarkers

SN - 1945-0265

IS - 7

ER -