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  1. Segerdahl P. (2020) Global sharing of genomic data requires perspicuous research communication. [Blog] The Ethics Blog: A blog from the Centre for Research Ethics & Bioethics (CRB), Uppsala Universitet. [Online] 14th October. Available at: https://ethicsblog.crb.uu.se/2020/10/14/global-sharing-of-genomic-data-requires-perspicuous-research-communication/. [Accessed: 29 October 2020]
  2. Milne R, Robillard J, Fisk J (2020) Working with and learning from participants in ELSI: The experience of the European Prevention of Alzheimer’s Dementia project. In: ELSI Conference, Working together to end dementia. Online. 13 October
  3. Crist C. (2020) Genomics Requires Greater Public Trust in Data Sharing, Researchers Say. [Online] Medscape. 6th October. Available at: https://www.medscape.com/viewarticle/938471.  [Accessed: 12 January 2021]
  4. Middleton A, Milne R, Atutornu J, Costa A, Morley, K.I, Patch C, Robarts L, Roberts J, et al (2020) Global public perceptions of genomic data sharing: what shapes the willingness to donate DNA and health data? American Journal of Human Genetics, vol. 107, issue 4, pp 743-752
  5. Masterson, D 2020. Global survey: Obtaining genetic information comes down to trust. NUTRA ingredients-usa.com [Online]. 28th September. Available at: https://www.nutraingredients-usa.com/Article/2020/09/28/Global-survey-Obtaining-genetic-information-comes-down-to-trust#. [Accessed: 29 September 2019]
  6. Gunn S. (2020) Data sharing at risk due to lack of public trust. [Online] Front Line Genomics. 27th September. Available at: https://frontlinegenomics.com/data-sharing-at-risk-due-to-lack-of-public-trust/?utm_source=FLGNewsletter&utm_medium=30Sep&utm_campaign=FLGNews   [Accessed: 23 October 2020]
  7. Film made by Lauren Robarts. Society and Ethics Research Wellcome Genome Campus (2020) Society and Ethics Research 2020 Showreel. Available at: https://youtu.be/dQ8RWIdid9g [Accessed: 25 September 2020]
  8. Tacc Hayka, 2020. 50% of those surveyed were ready to share their genetic data only anonymously. Takk Haka [online]. 24th September. Available from: https://nauka.tass.ru/nauka/9545021 [Accessed: 27 October 2020]
  9. Krasnaya Vesna IA, 2020. The Ministry of Education and Science declared the importance of promoting the benefits of genetic technologies. Rossa Primavera (красная весна) [online]. 24th September. Available from: https://rossaprimavera.ru/news/ce20b18e [Accessed: 29 September 2020]
  10. Zavtra News, 2020. The international study "YourDNAYourSay" showed: it is necessary to increase the level of public confidence in the exchange of genomic data. Zavtranews.ru [online]. 23rd September. Available from: https://zavtranews.ru/science/10737/ [Accessed: 27 October 2020]
  11. Министерство науки и высшего образования Российской Федерации (Ministry of Science and Higher Education of the Russian Federation), (2020) The international study "YourDNAYourSay" showed: it is necessary to increase the level of public confidence in the exchange of genomic data [online]. 23 September. Available at: https://www.minobrnauki.gov.ru/ru/press-center/card/?id_4=3108 [Accessed 23 October 2020]
  12. med.cap.ru, 2020. World study shows people's reluctance to participate in the exchange of genetic data. med.cap.ru [online]. 22nd September. Available from: https://www.med.cap.ru/press/2020/9/22/mirovoe-issledovanie-pokazalo-nezhelanie-lyudej-uc  [Accessed: 27 October 2020]
  13. Russian Medical Academy of Continuing Professional Education, 2020. Scientists from RMANPO took part in a global study of the attitude of the world community to genomic research and data exchange. Russian Medical Academy of Continuing Professional Education (РОССИЙСКАЯ МЕДИЦИНСКАЯ АКАДЕМИЯ НЕПРЕРЫВНОГО ПРОФЕССИОНАЛЬНОГО ОБРАЗОВАНИЯ) [online]. 22nd September. Available from: https://rmapo.ru/sveden/struct/rukovodstvo-aocftm/medicalbio/novosti-kafedry-medicinskoj-genetiki/9057-uchenye-rmanpo-prinjali-uchastie-v-globalnom-izuchenii-otnoshenija-mirovoj-obschestvennosti-k-genomnym-issledovanijam-i-obmenu-dannymi.html [Accessed: 27 October 2020]
  14. msn стиль жизни, на платформе Microsoft News, 2020. People do not trust organizations that deal with genetic information. msn стиль жизни, на платформе Microsoft News [online]. 21st September. Available from: https://www.msn.com/ru-ru/health/featured/люди-не-доверяют-работающим-с-генетической-информацией-организациям/ar-BB19g9JQ?li=BBoPWjK&srcref=rss   [Accessed: 30 October 2020]
  15. Nesterova Y, 2020. Most people are not ready to donate their DNA for research. PCR News [online]. 21st September. Available from: https://pcr.news/novosti/bolshinstvo-lyudey-ne-gotovo-cdavat-svoyu-dnk-dlya-issledovaniy/ [Accessed: 27 October 2020]
  16. N.P. Bochkova Medical Center, 2020. The results of a study of the attitude of the world community to the use of genetic information about people and the exchange of genetic data by various categories of researchers have been published. N.P. Bochkova Medical Center (Медико-генетический научный центр имени академика Н.П. Бочкова) [online]. 21st September. Available from: https://med-gen.ru/press-tcentr/novosti/opublikovany-rezul-taty-issledovaniia-otnosheniia-mirovoi-obshchestvennosti-k-ispol-zovaniiu-geneticheskoi-informatcii-o/   [Accessed: 27 October 2020]
  17. Centrum för forsknings- & bioetik (CRB), Uppsala Universitet, (2020) Forskare behöver allmänhetens förtroende för att kunna dela genomisk data. [online] 18th September. Available at: https://www.crb.uu.se/nyheter/text/?tarContentId=894190  [Accessed: 30 October 2020]
  18. Centre for Research Ethics & Bioethics (CRB), Uppsala University, (2020) Genomic data sharing requires public trust. [online] 18th September. Available at: https://www.crb.uu.se/news/item/?tarContentId=894190  [Accessed: 30 October 2020]
  19. Medvestnik, 2020. World study shows people's reluctance to participate in the exchange of genetic data. Medvestnik.ru (Медвестник) [online]. 18th September. Available from: https://medvestnik.ru/content/news/Mirovoe-issledovanie-pokazalo-nejelanie-ludei-uchastvovat-v-obmene-geneticheskimi-dannymi.html [Accessed: 27 October 2020]
  20. Cambridge Network 2020. Future of genomic research at risk without greater public trust in how genetic data is shared. Cambridge Network [Online]. 18th September. Available at: https://www.cambridgenetwork.co.uk/news/future-genomic-research-risk-without-greater-public-trust-how-genetic-data-shared  [Accessed: 29 September 2020]
  21. Chadwick, J 2020. Plumbers and teachers are invited to share their views on designer babies and genetically enhanced potatoes as part of a citizens' assembly on 're-engineering' the human species. Mail Online [Online]. 18th September. Available at: https://www.dailymail.co.uk/sciencetech/article-8748485/Gene-editing-Citizens-assembly-planned-engineering-human-species.html [Accessed: 28 September 2019]
  22. Tahir, M 2020. Genetics Data To Utilize For Advance Human Health And Medicine. Weekly Technology Times [Online]. 18th September. Available at: https://www.technologytimes.pk/2020/09/18/genetics-data-to-utilize-for-advance-human-health-and-medicine/  [Accessed: 28 September 2019]
  23. Dryzek JS, Nicol D, Niemeyer S... Middleton A, et al (2020) Global citizen deliberation on genome editing. Science, vol. 369, issue 6510, pp 1435-1437, September
  24. Genetics Info, 2020. The world's largest study showed that people do not trust organizations that work with genetic information, and do not want to participate in the exchange of genetic data. Genetics Info.ru [online]. 17th September. Available from: https://genetics-info.ru/blogs/krupneyshiy-za-vsyu-istoriyu-opros-pokazal-lyudi-vo-vsem-mire-ne-zhelayut-delitsya-svoey-genetichesk/. [Accessed: 27 October 2020]
  25. PHYS ORG 2020. Implications of powerful DNA-altering technology are too important to be left to scientists and politicians: researchers. PHYS ORG [Online]. 17th September. Available at: https://phys.org/news/2020-09-implications-powerful-dna-altering-technology-important.html  [Accessed: 29 September 2020]
  26. staff reporter 2020. Willingness to Donate DNA to Research Is Low, Global Survey Finds. genomeweb [Online]. 17th September. Available at: https://www.genomeweb.com/genetic-research/willingness-donate-dna-research-low-global-survey-finds#.X3HOWy2w36c  [Accessed: 28 September 2020]
  27. Clinical OMICs 2020. Survey: Future Benefit of Genomics at Risk Without Greater Public Trust. Clinical OMICs [online]. 17th September. Available at: https://www.clinicalomics.com/topics/informatics-topic/bioinformatics/big-data/survey-future-benefit-of-genomics-at-risk-without-greater-public-trust/  [Accessed: 28 September 2020].
  28. Jonathan Roberts: Cancer Research UK (CRUK) Grant (2020) CanRisk: Personalising cancer risk prediction for prevention and early detection. Co-applicants: Antoniou A, Easton D, Walter F, Tischkowitz M
  29. Milne R, Costa A, Brenman N (2020) Casting long shadows: phenotyping dementia and the making of the digital aging subject. In: 4S/European Association for Studies of Science and Technology Conference. Online. 21 August
  30. Milne R, Costa A (2020) Detecting value(s): moral economies of digital innovation in early disease detection. In: 4S/European Association for Studies of Science and Technology Conference. Online. 21 August

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