Lessons learned during the process of reporting individual genomic results to participants of a population-based biobank

Leitsalu, Liis; Reigo, Anu; Palover, Marili; Nikopensius, Tiit; Läll, Kristi; Krebs, Kristi; Reisberg, Sulev; Mägi, Reedik; Kals, Mart; Alavere, Helene; Nõukas, Margit; Kolk, Anneli; Normet, Ivi; Tammesoo, Mari‐Liis; Käärik, Ene; Puusepp, Mairo; Metsalu, Kristjan; Allik, Annely; Milani, Lili; Fischer, Krista; Tõnisson, Neeme; Metspalu, Andres

doi:10.1038/s41431-022-01196-6

Cited by 8 publications

(4 citation statements)

References 34 publications

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“…Indeed, the perspective of providing personal results to donors has been discussed since the launch of the biobank more than twenty years ago ( Sutrop & Simm, 2004 ). This has shaped public attitudes towards becoming a biobank participant: research conducted in Estonia suggests that donors see gaining personal benefits as more important ( Leitsalu, 2016 ). The campaigners may have thus calculated self-oriented appeals to be more persuasive compared to other-oriented appeals.…”

Section: Discussionmentioning

confidence: 99%

Persuasive Appeals in Genetic Biobank Recruitment Campaigns: Social and Ethical Implications

Meitern,

Hansson

2023

Journal of Empirical Research on Human Research Ethics

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The social and ethical implications of large-scale biobank donor recruitment campaigns have remained understudied. We use two recent campaigns of the population-based genetic biobank in Estonia as an example to demonstrate how campaign spokespersons try to persuade potential donors by appealing to (1) gaining self-knowledge, (2) gaining control over one's health, (3) fear of illness, (4) contributing to healthcare, (5) contributing to science, and (6) contributing to one's country. While these campaigns succeeded in recruiting 15 percent of the country's adult population as donors, we explain how the use of some of these appeals may (a) create unrealistic expectations regarding the benefits donors could receive and (b) conceal the risks regarding health data. The study lays a necessary groundwork for future empirical research on the ethics of biobank recruitment campaigns.

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Section: Discussionmentioning

confidence: 99%

Persuasive Appeals in Genetic Biobank Recruitment Campaigns: Social and Ethical Implications

Meitern,

Hansson

2023

Journal of Empirical Research on Human Research Ethics

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“…According to the data from the report of Clinical Sequencing Exploratory Research (CSER) Consortium report (Green et al, 2016 ) 32% of those with a detected secondary finding had positive family history. Recently, Leitsalu et al (Leitsalu et al, n.d. ) reported high satisfaction among biobank donors at receiving results on the genes listed in the ACMG recommendation. We do not know what proportion of the patients participated in pre‐test genetic counseling nor how well the tradition of non‐directive genetic counseling is respected in the countries included in this study.…”

Section: Discussionmentioning

confidence: 99%

Opt‐in for secondary findings as part of diagnostic whole‐exome sequencing: Real‐life experience from an international diagnostic laboratory

Brunfeldt

Kaare

Saarinen

et al. 2023

Molec Gen & Gen Med

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BackgroundDiscussion about the risks and benefits of offering secondary findings as part of genome‐wide diagnostics lacks real‐life data. We studied the opt‐in decisions of patients/families referred to whole exome study (WES) in Blueprint Genetics (BpG), a genetic testing company with customers in over 70 countries to receive secondary findings. Based on the American College of Medical Genetics (ACMG) recommendations for reporting secondary findings, BpG offered testing of specific actionable genes without additional charge for specimens submitted to WES diagnostics.MethodsIndividuals could opt‐in for a secondary findings analysis by using a separate electronic consent form. Data from BpG database of electronic consent forms was used for the analysis.ResultsDuring the selected study period there were 3263 WES referrals, from which 2012 were index patients. About half of the individuals (50.4%) opted in to receiving secondary findings. Of patients who opted in, a secondary finding was detected for 2.7%, similar to other studies. We detected huge differences relating to opt‐in between individuals from different countries; for instance, 90% of the 41 patients and their family members in Romania opted to receive secondary findings, while none of the 98 patients in Luxembourg chose that option.ConclusionDifferences between sexes or between children and adults were small. This data offers one view to the interest of patients and family members to opt in to receiving secondary findings. Research is needed to understand the influence of factors like age, education etc. and possible participation in pre‐test counseling to receiving/not receiving secondary findings.

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“…Although studies in some countries (such as Estonia, Latvia) have shown an increasing awareness and willingness to provide data to biobanks and decreasing concerns related to donation (Leitsalu, 2016;Mezinska et al, 2020a), in Slovakia, the awareness of biobanking has declined over 12 years. Quite a small percentage (~16%) of Slovak participants heard about biobank in 2022, but an even smaller number of them talked or searched for further information on the topic.…”

Section: General Discussion and Conclusionmentioning

confidence: 99%

“…More recent within-country surveys in CEE have shown positive trends in biobank awareness. For instance, in Estonia, the number of biobanking proponents rose from 18 percent in 2001 to 70 percent in 2014, and the number of respondents who were against biobanking decreased to 1 percent (Leitsalu, 2016). In Latvia, they observed an approximately 15 percent increase in willingness to share data with biobanks as well as a slight decline in concerns related to donorship (Mezinska et al, 2020a) .…”

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confidence: 99%

Monitoring Attitudes towards Research Biobanking in Central and Eastern Europe: An Alarming Absence of Data

Adamkovič¹,

Piterová²,

Fedáková³

2022

Preprint

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In recent years, biobanking infrastructure has been gradually built in Central and Eastern Europe. The long-term success of biobanking, however, depends on the public’s engagement in the process. The available evidence indicates low informedness and hesitancy towards biobanking in CEE. Understanding of driving forces and barriers in laypeople’s participation in biobanking is thus a key challenge. The present paper aims to (1) summarize the available evidence, especially from the CEE countries, on public awareness and willingness to participate in biobanking, (2) provide the results of a systematic review on psychological correlates of engagement in biobanking in CEE, and (3) highlight the most pressing issues regarding the available evidence. In general, public awareness, biobanks’ communication and cooperation, ethical and legal regulations, and institutional/governmental trust seem to determine public engagement in biobanking the most. However, cultural specifics are likely to play a major role. Unfortunately, there is a dearth of behavioral data on this topic for the CEE countries. General recommendations on how to increase laypeople’s participation in biobanking are discussed. For the field to progress, future in-depth research on this topic conducted in the CEE countries is needed.

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Lessons learned during the process of reporting individual genomic results to participants of a population-based biobank

Cited by 8 publications

References 34 publications

Persuasive Appeals in Genetic Biobank Recruitment Campaigns: Social and Ethical Implications

Persuasive Appeals in Genetic Biobank Recruitment Campaigns: Social and Ethical Implications

Opt‐in for secondary findings as part of diagnostic whole‐exome sequencing: Real‐life experience from an international diagnostic laboratory

Monitoring Attitudes towards Research Biobanking in Central and Eastern Europe: An Alarming Absence of Data

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