"The keeping is the problem": A qualitative study of IRB-member perspectives in Botswana on the collection, use, and storage of human biological samples for research

Francis Barchi, Keikantse Matlhagela, Nicola Jones, Poloko M. Kebaabetswe, Jon F. Merz

Research output: Contribution to journalArticle

9 Citations (Scopus)

Abstract

Background: Concurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, and benefit-sharing of biospecimens. Methods: This qualitative study examined perspectives of IRB members in Botswana about the collection and use of biospecimens in research. Forty-one IRB members representing five committees in Botswana participated in discussions groups in March 2013. Transcriptions of audiotapes and field notes were analyzed to identify issues of concern that might be alleviated through education and capacity-building, and areas that required ongoing discussion or additional regulatory guidance. Results: Areas of concern included lack of understanding among patients and providers about the use of biospecimens in clinical care and research; reuse of biospecimens, particularly issues of consent, ownership and decision-making; export of specimens and loss of control over reuse and potential benefits; and felt need for regulatory guidance and IRB-member training. Local belief systems about bodily integrity and strong national identity in the construct of benefits may be at odds with initiatives that involve foreign biorepositories or consider such collections to be global public goods. Conclusion: Education is needed to strengthen IRB-member capacity to review and monitor protocols calling for the collection and use of biospecimens, guided by clear national policy on priority-setting, partnerships, review, and oversight. Engagement with local stakeholders is needed to harmonize fundamentally different ways of understanding the human body and community identity with the aims of contemporary biomedicine.

Original languageEnglish (US)
Article number54
JournalBMC Medical Ethics
Volume16
Issue number1
DOIs
StatePublished - Aug 19 2015

Fingerprint

Botswana
Research Ethics Committees
Research
Education
required area
moral philosophy
Tape Recording
Capacity Building
Ethics Committees
medical technology
biomedicine
medical research
Ownership
Human Body
Ethics
qualitative method
group discussion
national identity
community
integrity

All Science Journal Classification (ASJC) codes

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy

Cite this

@article{5989bef4adb44b73b3730a2d9133a704,
title = "{"}The keeping is the problem{"}: A qualitative study of IRB-member perspectives in Botswana on the collection, use, and storage of human biological samples for research",
abstract = "Background: Concurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, and benefit-sharing of biospecimens. Methods: This qualitative study examined perspectives of IRB members in Botswana about the collection and use of biospecimens in research. Forty-one IRB members representing five committees in Botswana participated in discussions groups in March 2013. Transcriptions of audiotapes and field notes were analyzed to identify issues of concern that might be alleviated through education and capacity-building, and areas that required ongoing discussion or additional regulatory guidance. Results: Areas of concern included lack of understanding among patients and providers about the use of biospecimens in clinical care and research; reuse of biospecimens, particularly issues of consent, ownership and decision-making; export of specimens and loss of control over reuse and potential benefits; and felt need for regulatory guidance and IRB-member training. Local belief systems about bodily integrity and strong national identity in the construct of benefits may be at odds with initiatives that involve foreign biorepositories or consider such collections to be global public goods. Conclusion: Education is needed to strengthen IRB-member capacity to review and monitor protocols calling for the collection and use of biospecimens, guided by clear national policy on priority-setting, partnerships, review, and oversight. Engagement with local stakeholders is needed to harmonize fundamentally different ways of understanding the human body and community identity with the aims of contemporary biomedicine.",
author = "Francis Barchi and Keikantse Matlhagela and Nicola Jones and Kebaabetswe, {Poloko M.} and Merz, {Jon F.}",
year = "2015",
month = "8",
day = "19",
doi = "10.1186/s12910-015-0047-3",
language = "English (US)",
volume = "16",
journal = "BMC Medical Ethics",
issn = "1472-6939",
publisher = "BioMed Central",
number = "1",

}

"The keeping is the problem" : A qualitative study of IRB-member perspectives in Botswana on the collection, use, and storage of human biological samples for research. / Barchi, Francis; Matlhagela, Keikantse; Jones, Nicola; Kebaabetswe, Poloko M.; Merz, Jon F.

In: BMC Medical Ethics, Vol. 16, No. 1, 54, 19.08.2015.

Research output: Contribution to journalArticle

TY - JOUR

T1 - "The keeping is the problem"

T2 - A qualitative study of IRB-member perspectives in Botswana on the collection, use, and storage of human biological samples for research

AU - Barchi, Francis

AU - Matlhagela, Keikantse

AU - Jones, Nicola

AU - Kebaabetswe, Poloko M.

AU - Merz, Jon F.

PY - 2015/8/19

Y1 - 2015/8/19

N2 - Background: Concurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, and benefit-sharing of biospecimens. Methods: This qualitative study examined perspectives of IRB members in Botswana about the collection and use of biospecimens in research. Forty-one IRB members representing five committees in Botswana participated in discussions groups in March 2013. Transcriptions of audiotapes and field notes were analyzed to identify issues of concern that might be alleviated through education and capacity-building, and areas that required ongoing discussion or additional regulatory guidance. Results: Areas of concern included lack of understanding among patients and providers about the use of biospecimens in clinical care and research; reuse of biospecimens, particularly issues of consent, ownership and decision-making; export of specimens and loss of control over reuse and potential benefits; and felt need for regulatory guidance and IRB-member training. Local belief systems about bodily integrity and strong national identity in the construct of benefits may be at odds with initiatives that involve foreign biorepositories or consider such collections to be global public goods. Conclusion: Education is needed to strengthen IRB-member capacity to review and monitor protocols calling for the collection and use of biospecimens, guided by clear national policy on priority-setting, partnerships, review, and oversight. Engagement with local stakeholders is needed to harmonize fundamentally different ways of understanding the human body and community identity with the aims of contemporary biomedicine.

AB - Background: Concurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, and benefit-sharing of biospecimens. Methods: This qualitative study examined perspectives of IRB members in Botswana about the collection and use of biospecimens in research. Forty-one IRB members representing five committees in Botswana participated in discussions groups in March 2013. Transcriptions of audiotapes and field notes were analyzed to identify issues of concern that might be alleviated through education and capacity-building, and areas that required ongoing discussion or additional regulatory guidance. Results: Areas of concern included lack of understanding among patients and providers about the use of biospecimens in clinical care and research; reuse of biospecimens, particularly issues of consent, ownership and decision-making; export of specimens and loss of control over reuse and potential benefits; and felt need for regulatory guidance and IRB-member training. Local belief systems about bodily integrity and strong national identity in the construct of benefits may be at odds with initiatives that involve foreign biorepositories or consider such collections to be global public goods. Conclusion: Education is needed to strengthen IRB-member capacity to review and monitor protocols calling for the collection and use of biospecimens, guided by clear national policy on priority-setting, partnerships, review, and oversight. Engagement with local stakeholders is needed to harmonize fundamentally different ways of understanding the human body and community identity with the aims of contemporary biomedicine.

UR - http://www.scopus.com/inward/record.url?scp=84939422073&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84939422073&partnerID=8YFLogxK

U2 - 10.1186/s12910-015-0047-3

DO - 10.1186/s12910-015-0047-3

M3 - Article

C2 - 26286519

AN - SCOPUS:84939422073

VL - 16

JO - BMC Medical Ethics

JF - BMC Medical Ethics

SN - 1472-6939

IS - 1

M1 - 54

ER -