{"id":3516,"date":"2021-11-04T08:36:40","date_gmt":"2021-11-03T22:36:40","guid":{"rendered":"https:\/\/research.psy.uq.edu.au\/dorn\/?p=3516"},"modified":"2021-11-04T08:36:44","modified_gmt":"2021-11-03T22:36:44","slug":"featured-researcher-vera-raivola","status":"publish","type":"post","link":"https:\/\/research.psy.uq.edu.au\/dorn\/featured-researcher-vera-raivola\/","title":{"rendered":"Featured Researcher: Vera Raivola"},"content":{"rendered":"\t\t
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Vera Raivola<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Featured Researcher<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Vera is completing a PhD at the University of Eastern Finland. Her research looks at how voluntary blood donors approach the possibility to add biobank donation to their donation practices at the Finnish Red Cross Blood Service.<\/p>

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A biobank collects donor-related information and biological samples to be used for a variety of future research needs. In her DoRN Week of Talks, Vera discusses how biobank donation introduces new unknowns and uncertainties to blood donation, and how managing these unknowns and uncertainties needs to be a joint effort for blood donors and the blood service.<\/span><\/p>

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Quick facts about Vera <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Being able to learn everyday about interesting things!<\/span>\u00a0<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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I love the company of both and just like with any friends it is often the person that matters most. <\/span>\u00a0<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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Having a very long breakfast and then go with flow of that particular day. <\/span>\u00a0<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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I listen to something all the time and today it has been a Finnish quartet called Kamus and Unlocking Us with Bren\u00e9 Brown from Spotify.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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To become a better writer.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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To access Vera’s presentation from the DoRN Week of Talks, please click on the video below.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Q & As<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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The DoRN Week of Talks provided a unique opportunity to engage in an easy and convenient Q & A with presenters. Below we have listed the questions that we received for Vera, along with her answers.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/i><\/span>\n\t\t\t\t\t\t\t\t<\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\tGiven that donors acknowledge the 'risky and unknown' aspect of their consent to donate, do you think there is an ethical or moral need to re-consent donors each time their sample is used in research?<\/a>\n\t\t\t\t\t<\/h6>\n\n\t\t\t\t\t

There is lots of interesting research looking specifically at questions regarding the consent process, which might be useful (e.g. Sanderson, Brothers, Mercaldo et al. 2017; Tomlinson, De Vries, Kim et al. 2018; Petersen, Desmendt, Harris et al.2014). Asked about consent in my study context, the focus group discussion participants were clear about the need for opt-in consent, which they described not only as a moment of informing them about biobank but respecting their agency as voluntary partners in a shared, possibly risky social experiment aiming for new health care solutions. Instead of bringing up a need for individual consents by research case, the donors tended to express trusting the Blood Service and scientific research community to have the professional capacity to work out the best ways to deliver this mutual aim. However, donors did discuss expecting reciprocity in the form of useful and interesting information about biobank research using their donations and in making sure donors\u2019 interest and moral views were democratically represented in the biobank decision-making. \u00a0<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/i><\/span>\n\t\t\t\t\t\t\t\t<\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\tIt seems from your data that blood donors base a lot of their decisions on the trust they have established with the blood agency. If something was to occur to violate that trust - say in relation to the biobank - do you think you would see a mass withdrawal of donors from the panel or do you think that donors would stay because of the 'big bank' of trust that the blood agency has built up over the years?<\/a>\n\t\t\t\t\t<\/h6>\n\n\t\t\t\t\t

It is hard to answer, since how severely somethings tests donors trust depends on the occasion, context and cause of disappointment. For example, many of blood donors in my study had a relaxed attitude on public-private research partnerships, but said they did not want to see their voluntary contributions mostly to profit the wealthy few or to be used as means for discrimination; hence, media reports suggesting a serious breach of this contract could be a reason for them to protest. To find what might trigger such recession of trust, blood agencies could study the \u201cbuilding blocks\u201d of the trust relationship with their local donor community and to openly discuss with their donors about the principles perceived to underlie also the research collaboration. This way blood agencies could look at how these principles interacts with and translates into its new role in research and biobanking and identify some potential conflicts. According to Sheikh, Deleuran and Hoeyer (2016) openness makes the best trust building policy when dealing with complex moral issues related with the commercial aspects in the use of donated blood.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/i><\/span>\n\t\t\t\t\t\t\t\t<\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\tOne of your findings was that what it means to be a biobank donor was hypothetical at the time of data collection - I'm wondering if you will do follow-up research to understand more about how meanings may have changed with experience of donating to a biobank? <\/a>\n\t\t\t\t\t<\/h6>\n\n\t\t\t\t\t

In my opinion, such follow-up about the everyday practice of these new donor relations would be very useful. Since 2017 the Blood Service Biobank has successfully reached its donor consent targets, and has in that sense, become an established part of voluntary blood donation. However, as far as I know, there is no research plan for learning what this actually means to the donors and have their expectations somehow changed as some of the hypotheticals have become realized. I believe that the Finnish experiment would still have much learning to offer both academically and strategically also for other blood organisations.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/i><\/span>\n\t\t\t\t\t\t\t\t<\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\tI am wondering if you know the percentage of donors giving actual consent for the biobank? Is it similar to the percentage in your interviews\/focus groups? Did you discuss the types of results that biobank participants would like to receive, in these interviews? For example, some participants may be more interested in receiving individual test results (which is not always feasible, of course), compared to more general study outcomes. <\/a>\n\t\t\t\t\t<\/h6>\n\n\t\t\t\t\t

My excellent colleagues at the Blood Service Biobank would be able to give you the right numbers of consents given, but unfortunately, I am a bit out of date when it comes to the current rates. So, I would encourage you to contact\u00a0biopankki(at)veripalvelu.fi<\/a>, if you are interested in learning more. \u00a0While my qualitative data does not lend itself for any meaningful statistical inferences, I would guess that the real-life participation rate to remain somewhat lower than the numbers on the presentation slide, one reason being that the study participants represented a selection of donors who were prepared to give their time to research.<\/p>

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I did also ask study participants about their views on what they expected from the biobank participation. I would say that your framing of the question summarises these discussions very well as some indeed emphasised more the public interest and some personal interest when it came to research results. Not knowing yet what kind of results this biobank participation might provide them with, donors often find this question hard to answer. There seemed to be general understanding that it should be \u201cuseful\u201d not \u201cuseless\u201d or \u201charmful\u201d information in social or in personal terms. It was generally expected, however, that the Blood Service experts would immediately inform donors of any findings relevant to their health, as they would do with blood test results.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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First, I think there should be ongoing public discussion on what the costs\/benefits of biobanks look like for different people as we all learn more about their function and outputs. At least in Finland, biobanks are in large part public investments to which voluntary donors contribute with their personal data. So far, public discussion has emphasised the expert view on potential medical and economic benefits and less discussion has been about biobank donor experiences on benefits or the (opportunity) costs of these public\/personal investments (see e.g. Tarkkala, Hel\u00e9n & Snell 2019). Perhaps the blood service biobanks could be more actively engaged with this discussion on the public arenas and bring forward concrete examples of costs and benefits?<\/p>

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I also think it is very relevant to demarcate the two donations taking place in the same social context, and keep reminding blood donors who have given their consent that they are now also biobank data donors. Retaining a consciousness of biobank participation also helps avoiding the risk of feeling exploited if blood donors are suddenly reminded of this fact in a negative context, as (see also Sheikh, Deleuran and Hoeyer 2016). Blood service openly sharing with the blood donors what it has leaned about the costs and benefits of its biobank services to donors\/patients\/citizens, is part of the bigger process to familiarize donors with what it means to be a donor of biobank data as they are only creating opinions about biobanking. In his study, Cohn (2016) also made a case that the lack of concrete evidence of shared benefits and uncertainty of allocation of costs is the reason why some refuse to donate for unspecified research. How should this information be communicated and processed; and how to create space for a dialogue on aspects that might raise criticism? These are questions beyond my expertise but the kinds of practical problems experts at blood services around the world successfully work with every day.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Vera Raivola Featured Researcher Twitter Linkedin Link Vera is completing a PhD at the University of Eastern Finland. Her research looks at how voluntary blood …<\/p>\n","protected":false},"author":7,"featured_media":4591,"comment_status":"open","ping_status":"open","sticky":true,"template":"elementor_header_footer","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[11],"tags":[],"class_list":["post-3516","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"yoast_head":"\nFeatured Researcher: Vera Raivola - Donor Research Network<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/research.psy.uq.edu.au\/dorn\/featured-researcher-vera-raivola\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Featured Researcher: Vera Raivola - Donor Research Network\" \/>\n<meta property=\"og:description\" content=\"Vera Raivola Featured Researcher Twitter Linkedin Link Vera is completing a PhD at the University of Eastern Finland. 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