TABLE 1.
Overview of public involvement in biobanks in the studies included (biobanks are ordered in alphabetical order of biobank name when this was available)
| Name of the biobank (when available), country | Methods | Tasks | Description of the public actively involved | References |
|---|---|---|---|---|
| 80 biobanks in Western Australia [this group did not a formal name], Australia | Deliberative exercise | Governance | 16 citizens [Most were female (n = 12), aged 45 y or older (n = 12), had post‐secondary education (n = 11), were English‐speaking only (n = 15) and self‐identified as non‐Aboriginal (n = 16), Christian (n = 8) or nonreligious (n = 8)] | Molster et al 35 |
| Association Française Contre les Myopathies, France | Patient‐led biobank | Governance; Drafting operating policies and procedures; Researcher approval/access (governance of specimens); Commercialization; Promotional measures & recruitment strategies; Public education; Research & future involvement ideas | Association Française Contre les Myopathies—French Muscular Dystrophy Organisation (organization of neuromuscular disease patients and their parents): 4500 members | Rabeharisoa 42 |
| Alaska Area Specimen Bank (AASB), United States | Community‐Based Participatory Research; Lay Advisory Panel/Community Advisory Group | Governance; Drafting operating policies and procedures; Research protocols and PISs; Researcher approval/access (governance of specimens); Promotional measures & recruitment strategies; Research & future involvement ideas | Representatives from tribal health organizations | Parkinson et al 39 |
| Avon Longitudinal Study of Parents and Children (ALPSAC), United Kingdom | Deliberative exercise; Focus groups; Lay Advisory Panel/Community Advisory Group; Surveys | Governance | Diverse publics, in terms of ethnicity, socio‐economic status and region | Levitt 55 |
| BC Biobank, Canada | Deliberative exercise | Governance | ‐ | Walmsley, 22 Walmsley 50 |
| BC Biolibrary, Canada | Deliberative exercise | Governance; Models of consent (as distinct from reviewing the documents); Consent forms and documentation; Sample collection, storage, use and transfer; Researcher approval/access (governance of specimens); Promotional measures & recruitment strategies | 25 residents of British Columbia (Demographic stratification achieved)/21 British Columbians (stratified for ethnicity, religion, occupational group, sex and level of education) | O'Doherty and Hawkins, 24 O'Doherty et al, 56 Burgess et al 57 |
| CARTaGENE, Canada | Deliberative exercise; Focus groups | Promotional measures & recruitment strategies; Overall acceptability of project (generally at start of project) | Various population segments from four Quebec regions/21 people from the 5 health regions of BC [sampling methods to ensure a diverse range of participants, life‐experiences, values and discursive styles for the deliberation] | Godard et al, 46 O'Doherty and Burgess 58 |
| Centre for Alaska Native Health Research (CANHR), United States | Community‐Based Participatory Research | Governance | Local tribe councils in the villages + village representatives | Boyer et al 59 |
| Generation Scotland, United Kingdom | Focus groups | Governance; Sample collection, storage, use and transfer; Researcher approval/access (governance of specimens); Overall acceptability of project (generally at start of project) | 10 groups were purposively sampled and chosen to reflect a range of demographics (gender, ethnicity, and age), interests (patient, voluntary and civic groups) and localities (rural or city) aiming for diversity rather than representation and differing levels of ‘felt expertise’ | Haddow et al 38 |
| GHC/UW, United States | Focus groups; Public representative in biobank governance structure (Steering Committee) | Models of consent (as distinct from reviewing the documents); Researcher approval/access (governance of specimens); Return of results | Existing Alzheimer's cohort from research study, their surrogates and Group Health (GH) members from the Seattle, WA metro area & consumer representatives | Lemke et al 60 |
| Inherited Cancer Connect (ICCon) database, Australia | Focus groups; Lay Advisory Panel/Community Advisory Group | Governance; Models of consent (as distinct from reviewing the documents); Researcher approval/access (governance of specimens) | 24 consumers in 3 Australian states, and from a family with a heritable cancer syndrome | Forrest et al 34 |
| International HapMap Project, United States, Japan, China, Nigeria | Community‐Based Participatory Research; Deliberative exercise; Focus groups; Surveys | Governance; Drafting operating policies and procedures; Researcher approval/access (governance of specimens) | Baale community leader + 1 focus group and 3 public meetings in the Yoruba community & 8 focus groups and 5 public meetings in Japan & 6 focus group and 3 public meetings with Han Chinese in China/In New York: 38 people participated in the 4 focus groups, representing a wide array of ages, ethnicities and races, and incomes. & 7‐seat Community Advisory Group & A community dialogue consisting of 3 successive sessions, with limited number of participants & More than 200 individuals attended the conference | Rotimi et al, 61 Terry et al 37 |
| Kaiser Permanente, United States | Focus groups; Lay Advisory Panel/Community Advisory Group | Governance | Kaiser Permanente members in northern California, community members, participants, refusers, community panel members | Lemke et al 60 |
| Kilifi Genetic Birth Cohort (KGBC), Kenya | Community Engagement | Sample collection, storage, use and transfer | Chiefs [civil servants with at least 12 y of schooling, drawn from the ethnic community they serve] & Community: 8000 people attended in total, with between 50 and 300 people per meeting | Marsh et al 62 |
| Melbourne Genomics Health Alliance, Australia | Lay Advisory Panel/Community Advisory Group | Governance; Models of consent (as distinct from reviewing the documents); Promotional measures & recruitment strategies | ‐ | Watson, 63 Melbourne Genomics Health Alliance Community Advisory Group 64 |
| Metastatic Breast Cancer Alliance Biobank, United States | Focus groups | Promotional measures & recruitment strategies | Patient advocacy groups convened to a think tank of stakeholders | Flowers et al 65 |
| Multisite keloid study, Nigeria | Community‐Based Participatory Research | Promotional measures & recruitment strategies | Keloid patients (patient advisors), community leaders, kings/chiefs | Olaitan et al 66 |
| NuGene, United States | Focus groups; Lay Advisory Panel/Community Advisory Group; Surveys | Consent forms and documentation; Researcher approval/access (governance of specimens) | General public in Chicago area, biorepository participants & patient advocates | Lemke et al 60 |
| Nottingham Health Science Biobank, United Kingdom | Lay Advisory Panel/Community Advisory Group | Governance; Models of consent (as distinct from reviewing the documents); Consent forms and documentation | 5 PPI advocates, all of whom have had breast cancer or are the partners of people with a history of breast cancer | Mitchell et al, 3 Wilcox et al 21 |
| Patients' Tumor Bank of Hope (PATH Biobank), Germany | Patient‐led biobank | Governance; Drafting operating policies and procedures | Breast cancer survivors | Mitchell et al 3 |
| Peninsula Research Bank (PRB), United Kingdom | Ad‐hoc consultation & support; Lay Advisory Panel/Community Advisory Group; Public representative in biobank governance structure (Steering Committee) | Research protocols and PISs; Researcher approval/access (governance of specimens); Return of results; Research & future involvement ideas | 27 lay members (only two to six steering committee lay members attend any single meeting on a rolling basis) | Jenner et al 52 |
| Personalized Medicine Research Project (PMRP), United States | Ad‐hoc consultation & support; Focus groups; Lay Advisory Panel/Community Advisory Group; Public representative in ethics panel | Consent forms and documentation; Promotional measures & recruitment strategies; Public education | The two general population groups comprised 11 and 12 participants, respectively [representation across all age decades through 70+]/Adults from central Wisconsin, Marshfield Clinic employees, refusers, community representatives | Lemke et al, 60 McCarty et al 12 |
| PXE International Blood and Tissue Bank, United States | Patient‐led biobank | Research & future involvement ideas | Individuals bound by the effects of mutations in the ABCC6 gene that underlies PXE | Terry et al 43 |
| Roswell Park Cancer Institute DataBank and Biorepository, United States | Community‐Based Participatory Research | Promotional measures & recruitment strategies | Seven members reflecting diverse demographic characteristics | Erwin et al 67 |
| Tasmania Biobank, Australia | Deliberative exercise | Governance; Sample collection, storage, use and transfer; Commercialization | 25 Tasmanian residents of diverse backgrounds | McWhirter et al 49 |
| Telethon Network of Genetic Biobanks (TNGB), Italy | Ad‐hoc consultation & support; Community Engagement; Formal partnership with patient organization; Public representative in biobank governance structure (Steering Committee) | Governance; Drafting operating policies and procedures; Models of consent (as distinct from reviewing the documents); Sample collection, storage, use and transfer; Researcher approval/access (governance of specimens); Researcher approval/access (governance of specimens); Commercialization; Return of results; Incidental findings | Rare disease patient organizations & patient's associations | Filocamo et al, 40 Baldo et al 41 |
| The Breast Cancer Campaign Tissue Bank (BCCTB), United Kingdom | Lay Advisory Panel/Community Advisory Group; Public representative in biobank governance structure (Steering Committee) | Governance; Researcher approval/access (governance of specimens) | Five advocates taking active roles in the tissue bank; two sit on the management board and three on the tissue access committee | Wilcox et al 21 |
| The Mayo Clinic Biobank, United States | Deliberative exercise; Focus groups; Lay Advisory Panel/Community Advisory Group | Governance; Drafting operating policies and procedures; Models of consent (as distinct from reviewing the documents); Research protocols and PISs; Researcher approval/access (governance of specimens); Commercialization; Return of results; Promotional measures & recruitment strategies; Research & future involvement ideas | 19 members Biobank Community Advisory Board [range of ages and educational levels, half male and half female, 75% white]/20 local residents [of the Olmsted County, Minnesota community who varied by age, sex, social and economic status, race, ethnicity, and employment] in the deliberative exercise ‐ half of the participants from the deliberative exercise agreed to become members of a standing Community Advisory Board (CAB) + 10 other community members | Lemke et al, 60 Olson et al, 36 Kimball et al, 16 Mitchell et al 3 |
| UC Biobank, United States | Deliberative exercise | Governance; Models of consent (as distinct from reviewing the documents); Sample collection, storage, use and transfer; Return of results; Public education | 51 state residents as stakeholders and recruited residents from two large metropolitan areas, Los Angeles (LA) and San Francisco (SF), who had completed the 2009 California Health Interview Survey and were willing to be re‐contacted for future studies | Dry et al 68 |
| UK Biobank, United Kingdom | Focus groups; Lay Advisory Panel/Community Advisory Group | Promotional measures & recruitment strategies | 6× 6‐8 people in the north, south and south‐west of England, in Wales and Scotland, and an additional group in north‐west England consisted of ethnic minority groups not represented in the first five [all the groups had a spread of ages, socioeconomic groups and roughly equal numbers of men and women] | Levitt and Weldon, 69 Levitt, 55 People Science & Policy Ltd 70 |
| BioVU, United States | Focus groups; Lay Advisory Panel/Community Advisory Group; Surveys | Promotional measures & recruitment strategies; Overall acceptability of project (generally at start of project) | Vanderbilt Clinic, diverse adult outpatient clinic in Nashville, TN, community members, medical centre and university faculty and staff | Lemke et al 60 |
| Wales Cancer Bank, United Kingdom | Ad‐hoc consultation & support | Governance; Models of consent (as distinct from reviewing the documents); Consent forms and documentation; Sample collection, storage, use and transfer; Research protocols and PISs; Promotional measures & recruitment strategies | 4 lay members | Mitchell et al, 3 NIHR Cancer Research Network (NCRN) report 71 |
| Not focussing on any specific biobank | Bossert et al 31 , Coors et al 32 , Lemke et al 33 |