Introduction: To address ethical concerns about the of future research authorization, biobanks employing a broad model of consent can design ongoing communication with contributors. Notifying contributors at the time of sample distribution provides one form of communication to supplement broad consent. However, little is known about how community-informed governance might anticipate contributor responses and inform communication efforts. Objective: We explored the attitudes of members of a three-site Community Advisory Board (CAB) network. CAB members responded to a hypothetical proposal for notifying biobank contributors at the time of sample distribution to researchers utilizing the biobank. Methods: We used regularly scheduled CAB meetings to facilitate 3 large-group and 6 small-group discussions. Discussions were audio-recorded, transcribed, and analyzed for thematic content using descriptive thematic analysis. Results: The results challenged our expectation of general support for the proposed communications. While CAB members identified some advantages, they were concerned about several potential harms to biobank contributors and the biobank. The CABs understood biobank communication in terms of an ongoing relationship with the biobank and a personal contribution to research. Conclusion: Our findings contribute to the emerging literature on community engagement in biobanking. Additional communication with biobank contributors can serve a variety of value-based objectives to supplement broad consent. Design of communication efforts by biobanks can be improved by CAB members’ anticipation of the unintended consequences of additional contact with contributors. CAB members’ holistic interpretation of communication efforts suggests that biobank leadership considers all communication options as part of a more comprehensive communications strategy.

1.
Eiseman
E
,
Haga
SB
.
Handbook of human tissue sources: A national resource of human tissue samples.
Santa Monica, CA, 1999, National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report. Washington, DC: United States, Department of Health, Education and Welfare (DHEW), 1978, pp 40. Council for International Organizations of Medical Sciences (CIOMS). International ethical guidelines for health-related research involving humans. Geneva, Switzerland:WHO,
2016
, pp 122.
2.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report. Washington, DC: United States, Department of Health, Education and Welfare (DHEW), 1978, pp 40.
3.
Council for International Organizations of Medical Sciences (CIOMS). International ethical guidelines for health-related research involving humans. Geneva, Switzerland: WHO; 2016. pp 122.
4.
Meslin
EM
.
The value of using top-down and bottom-up approaches for building trust and transparency in biobanking
.
Public Health Genomics
.
2010
;
13
(
4
):
207
14
.
[PubMed]
1662-4246
5.
Greely
HT
.
The uneasy ethical and legal underpinnings of large-scale genomic biobanks
.
Annu Rev Genomics Hum Genet
.
2007
;
8
(
1
):
343
64
.
[PubMed]
1527-8204
6.
Haga
SB
,
Beskow
LM
.
Ethical, legal, and social implications of biobanks for genetics research
.
Adv Genet
.
2008
;
60
:
505
44
.
[PubMed]
0065-2660
7.
Lynch
HF
,
Bierer
BE
,
Cohen
IG
.
Confronting biospecimen exceptionalism in proposed revisions to the common rule
.
Hastings Cent Rep
.
2016
Jan-Feb
;
46
(
1
):
4
5
.
[PubMed]
0093-0334
8.
Dawson
L
.
Common rule revised: opportunities lost
.
Am J Bioeth
.
2017
Jul
;
17
(
7
):
46
8
.
[PubMed]
1526-5161
9.
Henderson
GE
,
Cadigan
RJ
,
Edwards
TP
,
Conlon
I
,
Nelson
AG
,
Evans
JP
, et al
Characterizing biobank organizations in the U.S.: results from a national survey
.
Genome Med
.
2013
Jan
;
5
(
1
):
3
.
[PubMed]
1756-994X
10.
Critchley
C
,
Nicol
D
,
Otlowski
M
.
The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research
.
Public Health Genomics
.
2015
;
18
(
3
):
160
72
.
[PubMed]
1662-4246
11.
Shabani
M
,
Dove
ES
,
Murtagh
M
,
Knoppers
BM
,
Borry
P
.
Oversight of genomic data sharing: what roles for ethics and data access committees?
Biopreserv Biobank
.
2017
Oct
;
15
(
5
):
469
74
.
[PubMed]
1947-5535
12.
Shabani
M
,
Knoppers
BM
,
Borry
P
.
From the principles of genomic data sharing to the practices of data access committees
.
EMBO Mol Med
.
2015
May
;
7
(
5
):
507
9
.
[PubMed]
1757-4676
13.
Haldeman
KM
,
Cadigan
RJ
,
Davis
A
,
Goldenberg
A
,
Henderson
GE
,
Lassiter
D
, et al
Community engagement in US biobanking: multiplicity of meaning and method
.
Public Health Genomics
.
2014
;
17
(
2
):
84
94
.
[PubMed]
1662-4246
14.
McCarty
CA
,
Garber
A
,
Reeser
JC
,
Fost
NC
;
Personalized Medicine Research Project Community Advisory Group and Ethics and Security Advisory Board
.
Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank
.
Am J Med Genet A
.
2011
Apr
;
155A
(
4
):
737
41
.
[PubMed]
1552-4825
15.
Meulenkamp
TM
,
Gevers
SK
,
Bovenberg
JA
,
Koppelman
GH
,
van Hylckama Vlieg
A
,
Smets
EM
.
Communication of biobanks’ research results: what do (potential) participants want?
Am J Med Genet A
.
2010
Oct
;
152A
(
10
):
2482
92
.
[PubMed]
1552-4825
16.
Kraft
SA
,
Cho
MK
,
Gillespie
K
,
Halley
M
,
Varsava
N
,
Ormond
KE
, et al
Beyond consent: building trusting relationships with diverse populations in precision medicine research
.
Am J Bioeth
.
2018
Apr
;
18
(
4
):
3
20
.
[PubMed]
1526-5161
17.
Mester
JL
,
Mercer
M
,
Goldenberg
A
,
Moore
RA
,
Eng
C
,
Sharp
RR
.
Communicating with biobank participants: preferences for receiving and providing updates to researchers
.
Cancer Epidemiol Biomarkers Prev
.
2015
Apr
;
24
(
4
):
708
12
.
[PubMed]
1055-9965
18.
Sanchini
V
,
Bonizzi
G
,
Disalvatore
D
,
Monturano
M
,
Pece
S
,
Viale
G
, et al
A trust-based pact in research biobanks: from theory to practice
.
Bioethics
.
2016
May
;
30
(
4
):
260
71
.
[PubMed]
0269-9702
19.
O’Doherty
KC
,
Burgess
MM
,
Edwards
K
,
Gallagher
RP
,
Hawkins
AK
,
Kaye
J
, et al
From consent to institutions: designing adaptive governance for genomic biobanks
.
Soc Sci Med
.
2011
Aug
;
73
(
3
):
367
74
.
[PubMed]
0277-9536
20.
Hansson
MG
.
Building on relationships of trust in biobank research
.
J Med Ethics
.
2005
Jul
;
31
(
7
):
415
8
.
[PubMed]
0306-6800
21.
Budin-Ljøsne
I
,
Teare
HJ
,
Kaye
J
,
Beck
S
,
Bentzen
HB
,
Caenazzo
L
, et al
Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
.
BMC Med Ethics
.
2017
Jan
;
18
(
1
):
4
.
[PubMed]
1472-6939
22.
Kaye
J
,
Whitley
EA
,
Lund
D
,
Morrison
M
,
Teare
H
,
Melham
K
.
Dynamic consent: a patient interface for twenty-first century research networks
.
Eur J Hum Genet
.
2015
Feb
;
23
(
2
):
141
6
.
[PubMed]
1018-4813
23.
Spencer
K
,
Sanders
C
,
Whitley
EA
,
Lund
D
,
Kaye
J
,
Dixon
WG
.
Patient perspectives on sharing anonymized personal health data using a digital system for dynamic consent and research feedback: a qualitative study
.
J Med Internet Res
.
2016
Apr
;
18
(
4
):
e66
.
[PubMed]
1438-8871
24.
Thiel
DB
,
Platt
J
,
Platt
T
,
King
SB
,
Fisher
N
,
Shelton
R
, et al
Testing an online, dynamic consent portal for large population biobank research
.
Public Health Genomics
.
2015
;
18
(
1
):
26
39
.
[PubMed]
1662-4246
25.
Whitley
EA
,
Kanellopoulou
N
,
Kaye
J
.
Consent and research governance in biobanks: evidence from focus groups with medical researchers
.
Public Health Genomics
.
2012
;
15
(
5
):
232
42
.
[PubMed]
1662-4246
26.
De Vries
RG
,
Tomlinson
T
,
Kim
HM
,
Krenz
C
,
Haggerty
D
,
Ryan
KA
, et al
Understanding the public’s reservations about broad consent and study-by-study consent for donations to a biobank: results of a national survey
.
PLoS One
.
2016
Jul
;
11
(
7
):
e0159113
.
[PubMed]
1932-6203
27.
Mayo Clinic Biobank [Internet]. Mayo clinic biobank consent form. [cited 2020 Feb 29]. Available from: https://www.mayo.edu/research/documents/biobank-consent-form/doc-20086428
28.
Mayo clinic biobank revocation of authorization form [Internet]. [cited 2020 Feb 29]. Available from: https://www.mayo.edu/research/documents/biobank-withdrawal-form/doc-20086431.
29.
Hofmann
B
.
Broadening consent—and diluting ethics?
J Med Ethics
.
2009
Feb
;
35
(
2
):
125
9
.
[PubMed]
0306-6800
30.
Horn
EJ
,
Edwards
K
,
Terry
SF
.
Engaging research participants and building trust
.
Genet Test Mol Biomarkers
.
2011
Dec
;
15
(
12
):
839
40
.
[PubMed]
1945-0265
31.
Mitchell
D
,
Geissler
J
,
Parry-Jones
A
,
Keulen
H
,
Schmitt
DC
,
Vavassori
R
, et al
Biobanking from the patient perspective
.
Res Involv Engagem
.
2015
Jun
;
1
(
1
):
4
.
[PubMed]
2056-7529
32.
Olson
JE
,
Ryu
E
,
Johnson
KJ
,
Koenig
BA
,
Maschke
KJ
,
Morrisette
JA
, et al
The Mayo Clinic Biobank: a building block for individualized medicine
.
Mayo Clin Proc
.
2013
Sep
;
88
(
9
):
952
62
.
[PubMed]
0025-6196
33.
Shaibi
G
,
Singh
D
,
De Filippis
E
,
Hernandez
V
,
Rosenfeld
B
,
Otu
E
, et al
The Sangre por Salud biobank: facilitating genetic research in an underrepresented latino community
.
Public Health Genomics
.
2016
;
19
(
4
):
229
38
.
[PubMed]
1662-4246
34.
Allyse
MA
,
McCormick
JB
,
Sharp
RR
.
Prudentia populo: involving the community in biobank governance
.
Am J Bioeth
.
2015
;
15
(
9
):
1
3
.
[PubMed]
1526-5161
35.
Alexander
CA
.
What does a representative represent?
Soc Work
.
1976
;
21
:
5
9
.0037-8046
36.
Shaibi
GQ
,
Kullo
IJ
,
Singh
DP
,
Sharp
RR
,
De Filippis
E
,
Cuellar
I
, et al
Developing a process for returning medically actionable genomic variants to latino patients in a federally qualified health center
.
Public Health Genomics
.
2018
;
21
(
1-2
):
77
84
.
[PubMed]
1662-4246
37.
Kimball
BC
,
Nowakowski
KE
,
Maschke
KJ
,
McCormick
JB
.
Genomic data in the electronic medical record: perspectives from a biobank community advisory board
.
J Empir Res Hum Res Ethics
.
2014
Dec
;
9
(
5
):
16
24
.
[PubMed]
1556-2646
38.
Guest
G
,
Namey
E
,
McKenna
K
.
How many focus groups are enough? Building an evidence base for nonprobability sample sizes
.
Field Methods
.
2016
;
29
(
1
):
3
22
. 1525-822X
39.
Mayo Clinic Biobank [Internet]. Mayo Clinic Biobank Overview. [cited 2020 Feb 29]. Available from: http://www.mayo.edu/research/centers-programs/mayo-clinic-biobank/overview
40.
Charmaz
K
. Grounded theory in the 21st century: applications for advancing social justice. In:
Denzin
N
,
Lincoln
Y
, editors
.
The Sage Handbook of Qualitative Research
.
Sage
;
2005
. pp.
507
35
.
41.
Strauss
C
. Grounded theory methodology. In:
Denzin
N
,
Lincoln
Y
, editors
.
Handbook of Qualitative Research
.
Sage
;
1994
. pp.
217
85
.
42.
Saldaña
J
.
The Coding Manual for Qualitative Researchers
[
Third edition
]
Los Angeles, Calif.; London
:
SAGE
;
2016
. pp.
28
30
.
43.
Basit
T
.
Manual or electronic? The role of coding in qualitative data analysis
.
Educ Res
.
2003
;
45
(
2
):
143
54
. 0013-1881
44.
Wilkinson
S
.
Focus group methodology: a review
.
Int J Soc Res Methodol
.
1998
;
1
(
3
):
181
203
. 1364-5579
45.
Hsieh
HF
,
Shannon
SE
.
Three approaches to qualitative content analysis
.
Qual Health Res
.
2005
Nov
;
15
(
9
):
1277
88
.
[PubMed]
1049-7323
46.
Birks
M
,
Chapman
Y
,
Francis
K
.
Memoing in qualitative research: probing data and processes
.
J Res Nurs
.
2008
;
13
(
1
):
68
75
. 1744-9871
47.
Fabsitz
RR
,
McGuire
A
,
Sharp
RR
,
Puggal
M
,
Beskow
LM
,
Biesecker
LG
, et al;
National Heart, Lung, and Blood Institute working group
.
Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group
.
Circ Cardiovasc Genet
.
2010
Dec
;
3
(
6
):
574
80
.
[PubMed]
1942-325X
48.
Fernandez
CV
,
Ruccione
K
,
Wells
RJ
,
Long
JB
,
Pelletier
W
,
Hooke
MC
, et al;
COG Return of Results Task Force
.
Recommendations for the return of research results to study participants and guardians: a report from the Children’s Oncology Group
.
J Clin Oncol
.
2012
Dec
;
30
(
36
):
4573
9
.
[PubMed]
0732-183X
49.
Beskow
LM
,
Burke
W
,
Fullerton
SM
,
Sharp
RR
.
Offering aggregate results to participants in genomic research: opportunities and challenges
.
Genet Med
.
2012
Apr
;
14
(
4
):
490
6
.
[PubMed]
1098-3600
50.
Allen
NL
,
Karlson
EW
,
Malspeis
S
,
Lu
B
,
Seidman
CE
,
Lehmann
LS
.
Biobank participants’ preferences for disclosure of genetic research results: perspectives from the OurGenes, OurHealth, OurCommunity project
.
Mayo Clin Proc
.
2014
Jun
;
89
(
6
):
738
46
.
[PubMed]
0025-6196
51.
De Clercq
E
,
Kaye
J
,
Wolf
SM
,
Koenig
BA
,
Elger
BS
.
Returning results in biobank research: global trends and solutions
.
Genet Test Mol Biomarkers
.
2017
Mar
;
21
(
3
):
128
31
.
[PubMed]
1945-0265
52.
Siminoff
LA
,
Traino
HM
,
Mosavel
M
,
Barker
L
,
Gudger
G
,
Undale
A
.
Family decision maker perspectives on the return of genetic results in biobanking research
.
Genet Med
.
2016
Jan
;
18
(
1
):
82
8
.
[PubMed]
1098-3600
53.
Murphy
J
,
Scott
J
,
Kaufman
D
,
Geller
G
,
LeRoy
L
,
Hudson
K
.
Public perspectives on informed consent for biobanking
.
Am J Public Health
.
2009
Dec
;
99
(
12
):
2128
34
.
[PubMed]
0090-0036
54.
Shabani
M
,
Bezuidenhout
L
,
Borry
P
.
Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review
.
Expert Rev Mol Diagn
.
2014
Nov
;
14
(
8
):
1053
65
.
[PubMed]
1473-7159
55.
Hoeyer
K
.
Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity?
Public Health Genomics
.
2010
;
13
(
6
):
345
52
.
[PubMed]
1662-4246
56.
Simon
CM
,
Newbury
E
,
'heureux
JL
.
Protecting participants, promoting progress: public perspectives on community advisory boards (CABs) in biobanking
.
J Empir Res Hum Res Ethics
.
2011
Sep
;
6
(
3
):
19
30
.
[PubMed]
1556-2646
57.
McCarty
CA
,
Chapman-Stone
D
,
Derfus
T
,
Giampietro
PF
,
Fost
N
;
Marshfield Clinic PMRP Community Advisory Group
.
Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project
.
Am J Med Genet A
.
2008
Dec
;
146A
(
23
):
3026
33
.
[PubMed]
1552-4825
58.
Lemke
AA
,
Wu
JT
,
Waudby
C
,
Pulley
J
,
Somkin
CP
,
Trinidad
SB
.
Community engagement in biobanking: experiences from the eMERGE Network
.
Genomics Soc Policy
.
2010
;
6
(
3
):
50
.
[PubMed]
1746-5354
59.
Erwin
DO
,
Moysich
K
,
Kiviniemi
MT
,
Saad-Harfouche
FG
,
Davis
W
,
Clark-Hargrave
N
, et al
Community-based partnership to identify keys to biospecimen research participation
.
J Cancer Educ
.
2013
Mar
;
28
(
1
):
43
51
.
[PubMed]
0885-8195
60.
Clayton
EW
,
Halverson
CM
,
Sathe
NA
,
Malin
BA
.
A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States
.
PLoS One
.
2018
Oct
;
13
(
10
):
e0204417
.
[PubMed]
1932-6203
61.
Rothstein
MA
,
Knoppers
BM
,
Harrell
HL
.
Comparative approaches to biobanks and privacy
.
J Law Med Ethics
.
2016
Mar
;
44
(
1
):
161
72
.
[PubMed]
1073-1105
62.
Husedzinovic
A
,
Ose
D
,
Schickhardt
C
,
Fröhling
S
,
Winkler
EC
.
Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature
.
Eur J Hum Genet
.
2015
Dec
;
23
(
12
):
1607
14
.
[PubMed]
1018-4813
63.
Christofides
E
,
Stroud
K
,
Tullis
DE
,
O’Doherty
KC
.
Improving dissemination of study results: perspectives of individuals with cystic fibrosis
.
Res Ethics Rev
.
2019
;
15
(
3-4
):
1
14
. 1747-0161
64.
Locock
L
,
Boylan
AM
.
Biosamples as gifts? How participants in biobanking projects talk about donation
.
Health Expect
.
2016
Aug
;
19
(
4
):
805
16
.
[PubMed]
1369-6513
65.
Harris
JR
,
Burton
P
,
Knoppers
BM
,
Lindpaintner
K
,
Bledsoe
M
,
Brookes
AJ
, et al
Toward a roadmap in global biobanking for health
.
Eur J Hum Genet
.
2012
Nov
;
20
(
11
):
1105
11
.
[PubMed]
1018-4813
66.
Michie
M
,
Henderson
G
,
Garrett
J
,
Corbie-Smith
G
.
“If I could in a small way help”: motivations for and beliefs about sample donation for genetic research
.
J Empir Res Hum Res Ethics
.
2011
Jun
;
6
(
2
):
57
70
.
[PubMed]
1556-2646
67.
Scott
A
,
Phillips
H
,
Moore
A
,
Du Plessis
R
.
Ethics in practice: conversations about biobanks
.
Crit Public Health
.
2005
;
15
(
4
):
359
68
. 0958-1596
68.
Lipworth
W
,
Forsyth
R
,
Kerridge
I
.
Tissue donation to biobanks: a review of sociological studies
.
Sociol Health Illn
.
2011
Jul
;
33
(
5
):
792
811
.
[PubMed]
0141-9889
69.
Richards
JE
,
Bane
E
,
Fullerton
SM
,
Ludman
EJ
,
Jarvik
G
.
Allocation of resources to communication of research result summaries
.
J Empir Res Hum Res Ethics
.
2016
Oct
;
11
(
4
):
364
9
.
[PubMed]
1556-2646
70.
McIntyre
J
,
Jimenez
J
,
Rivera
YM
,
Sutton
SK
,
Asencio
G
,
Castro-Figueroa
EM
, et al
Comparison of health communication channels for reaching hispanics about biobanking: a pilot trial
.
J Cancer Educ
.
2017
.
[PubMed]
0885-8195
71.
Van den Bussche
E
,
Van den Noortgate
W
,
Reynvoet
B
.
Mechanisms of masked priming: a meta-analysis
.
Psychol Bull
.
2009
May
;
135
(
3
):
452
77
.
[PubMed]
0033-2909
72.
Hansson
MG
,
Dillner
J
,
Bartram
CR
,
Carlson
JA
,
Helgesson
G
.
Should donors be allowed to give broad consent to future biobank research?
Lancet Oncol
.
2006
Mar
;
7
(
3
):
266
9
.
[PubMed]
1470-2045
73.
Sheehan
M
.
Can Broad Consent be Informed Consent?
Public Health Ethics
.
2011
Nov
;
4
(
3
):
226
35
.
[PubMed]
1754-9973
74.
Lunshof
JE
,
Chadwick
R
,
Vorhaus
DB
,
Church
GM
.
From genetic privacy to open consent
.
Nat Rev Genet
.
2008
May
;
9
(
5
):
406
11
.
[PubMed]
1471-0056
75.
Allen
J
,
McNamara
B
.
Reconsidering the value of consent in biobank research
.
Bioethics
.
2011
Mar
;
25
(
3
):
155
66
.
[PubMed]
0269-9702
76.
O’Neill
O
.
Accountability, trust and informed consent in medical practice and research
.
Clin Med (Lond)
.
2004
May-Jun
;
4
(
3
):
269
76
.
[PubMed]
1470-2118
77.
Richardson
HS
,
Cho
MK
.
Secondary researchers’ duties to return incidental findings and individual research results: a partial-entrustment account
.
Genet Med
.
2012
Apr
;
14
(
4
):
467
72
.
[PubMed]
1098-3600
78.
Ploug
T
,
Holm
S
.
Meta consent: a flexible and autonomous way of obtaining informed consent for secondary research
.
BMJ
.
2015
May
;
350
(
may07 31
):
h2146
.
[PubMed]
0959-8138
79.
Ploug
T
,
Holm
S
.
The biobank consent debate: why ‘meta-consent’ is still the solution!
J Med Ethics
.
2019
May
;
45
(
5
):
295
7
.
[PubMed]
0306-6800
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