{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,4]],"date-time":"2026-10-04T02:16:05Z","timestamp":1791080165819,"version":"4.1.0"},"reference-count":55,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2021,7,9]],"date-time":"2021-07-09T00:00:00Z","timestamp":1625788800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2021,7,9]],"date-time":"2021-07-09T00:00:00Z","timestamp":1625788800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Department of Innovation, Research and University of the Autonomous Province of Bozen\/Bolzano"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Community Genet"],"published-print":{"date-parts":[[2021,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Legal, financial and organizational challenges and the absence of coherent international guidelines and legal frameworks still discourage many genetic studies to share individual research results with their participants. Studies and institutions deciding to return genetic results will need to design their own study-specific return policy after due consideration of the ethical responsibilities. The Cooperative Health Research in South Tyrol (CHRIS) study, a healthy cohort study, did not foresee the return of individual genomic results during its baseline phase. However, as it was expected that the follow-up phase would generate an increasing amount of reliable genetic results, an update of the return of research results (RoRR) policy became necessary. To inform this revision, an empirical study using mixed methods was developed to investigate the views of CHRIS research participants (20), local general practitioners (3) and the local genetic counselling service (1). During the interviews, three different examples of potential genetic results with a very diverse potential impact on participants were presented: breast cancer, Parkinson disease and Huntington disease. The CHRIS participants also completed a short questionnaire, collecting personal information and asking for a self-evaluation of their knowledge about genetics. This study made it clear that research participants want to make autonomous decisions on the disclosure or non-disclosure of their results. While the motivations for participants\u2019 decisions were very diverse, we were able to identify several common criteria that had a strong influence on their choices. Providing information on these factors is crucial to enable participants to make truly informed decisions.<\/jats:p>","DOI":"10.1007\/s12687-021-00536-1","type":"journal-article","created":{"date-parts":[[2021,7,9]],"date-time":"2021-07-09T08:03:16Z","timestamp":1625817796000},"page":"577-592","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":13,"title":["Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants"],"prefix":"10.1007","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3185-440X","authenticated-orcid":false,"given":"Ciara","family":"Staunton","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"K\u00f6sters","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9831-8302","authenticated-orcid":false,"given":"Peter P.","family":"Pramstaller","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4156-1464","authenticated-orcid":false,"given":"Deborah","family":"Mascalzoni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2021,7,9]]},"reference":[{"issue":"1","key":"536_CR1","doi-asserted-by":"publisher","first-page":"68","DOI":"10.1038\/gim.2014.151","volume":"17","author":"BoD ACMG","year":"2015","unstructured":"ACMG BoD (2015) ACMG policy statement: updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing. Genet Med 17(1):68\u201369. https:\/\/doi.org\/10.1038\/gim.2014.151","journal-title":"Genet Med"},{"issue":"6","key":"536_CR2","doi-asserted-by":"publisher","first-page":"738","DOI":"10.1016\/j.mayocp.2014.03.015","volume":"89","author":"NL Allen","year":"2014","unstructured":"Allen NL, Karlson EW, Malspeis S, Lu B, Seidman CE, Lehmann LS (2014) Biobank participants\u2019 preferences for disclosure of genetic research results: perspectives from the OurGenes, OurHealth. OurCommunity Project Mayo Clin Proc 89(6):738\u2013746. https:\/\/doi.org\/10.1016\/j.mayocp.2014.03.015","journal-title":"OurCommunity Project Mayo Clin Proc"},{"issue":"2","key":"536_CR3","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1525\/jer.2012.7.2.3","volume":"7","author":"EE Anderson","year":"2012","unstructured":"Anderson EE, Solomon S, Heitman E et al (2012) Research ethics education for community-engaged research: a review and research agenda. J Empir Res Hum Res Ethics. 7(2):3\u201319. https:\/\/doi.org\/10.1525\/jer.2012.7.2.3","journal-title":"J Empir Res Hum Res Ethics."},{"issue":"5","key":"536_CR4","doi-asserted-by":"publisher","first-page":"435","DOI":"10.1136\/jme.2002.001578","volume":"30","author":"R Andorno","year":"2004","unstructured":"Andorno R (2004) The right not to know: an autonomy based approach. J Med Ethics 30(5):435\u2013439. https:\/\/doi.org\/10.1136\/jme.2002.001578","journal-title":"J Med Ethics"},{"issue":"6","key":"536_CR5","doi-asserted-by":"publisher","first-page":"651","DOI":"10.2217\/pme.11.62","volume":"8","author":"M Angrist","year":"2011","unstructured":"Angrist M (2011) You never call, you never write: why return of \u2018omic\u2019 results to research participants is both a good idea and a moral imperative. Per Med 8(6):651\u2013657. https:\/\/doi.org\/10.2217\/pme.11.62","journal-title":"Per Med"},{"issue":"11","key":"536_CR6","first-page":"2622","volume":"23","author":"MJ Belotto","year":"2018","unstructured":"Belotto MJ (2018) Data Analysis Methods for Qualitative Research: Managing the Challenges of Coding, Interrater Reliability, and Thematic Analysis. The Qualitative Report 23(11):2622\u20132633","journal-title":"The Qualitative Report"},{"issue":"11","key":"536_CR7","doi-asserted-by":"publisher","first-page":"860","DOI":"10.1038\/gim.2013.133","volume":"15","author":"JS Berg","year":"2013","unstructured":"Berg JS, Amendola LM, Eng C, Van Allen E, Gray SW, Wagle N, Rehm HL, DeChene ET, Dulik MC, Hisama FM, Burke W, Spinner NB, Garraway L, Green RC, Plon S, Evans JP, Jarvik GP (2013) Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium. Genet Med 15(11):860\u2013867. https:\/\/doi.org\/10.1038\/gim.2013.133","journal-title":"Genet Med"},{"issue":"5","key":"536_CR8","doi-asserted-by":"publisher","first-page":"467","DOI":"10.1038\/gim.2015.104","volume":"18","author":"JS Berg","year":"2016","unstructured":"Berg JS, Foreman AKM, O\u2019Daniel JM, Booker JK, Boshe L, Carey T, Crooks KR, Jensen BC, Juengst ET, Lee K, Nelson DK, Powell BC, Powell CM, Roche MI, Skrzynia C, Strande NT, Weck KE, Wilhelmsen KC, Evans JP (2016) A semiquantitative metric for evaluating clinical actionability of incidental or secondary findings from genome-scale sequencing. Genetics in Medicine\u202f: Official Journal of the American College of Medical Genetics 18(5):467\u2013475. https:\/\/doi.org\/10.1038\/gim.2015.104","journal-title":"Genetics in Medicine : Official Journal of the American College of Medical Genetics"},{"issue":"2","key":"536_CR9","doi-asserted-by":"publisher","first-page":"103","DOI":"10.1038\/gim.2012.105","volume":"15","author":"MJ Bledsoe","year":"2013","unstructured":"Bledsoe MJ, Clayton EW, McGuire AL, Grizzle WE, O\u2019Rourke PP, Zeps N (2013) Return of research results from genomic biobanks: cost matters. Genetics in Medicine\u202f: Official Journal of the American College of Medical Genetics 15(2):103\u2013105. https:\/\/doi.org\/10.1038\/gim.2012.105","journal-title":"Genetics in Medicine : Official Journal of the American College of Medical Genetics"},{"issue":"4","key":"536_CR10","doi-asserted-by":"publisher","first-page":"451","DOI":"10.1038\/gim.2011.66","volume":"14","author":"JM Bollinger","year":"2012","unstructured":"Bollinger JM, Scott J, Dvoskin R, Kaufman D (2012) Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study. Genet Med 14(4):451\u2013457. https:\/\/doi.org\/10.1038\/gim.2011.66","journal-title":"Genet Med"},{"issue":"8","key":"536_CR11","doi-asserted-by":"publisher","first-page":"861","DOI":"10.1002\/humu.21518","volume":"32","author":"AL Bredenoord","year":"2011","unstructured":"Bredenoord AL, Onland-Moret NC, Van Delden JJ (2011) Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy. Hum Mutat 32(8):861\u2013867. https:\/\/doi.org\/10.1002\/humu.21518","journal-title":"Hum Mutat"},{"key":"536_CR12","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1177\/1747016111435576","volume":"8","author":"I Budin-Lj\u00f8sne","year":"2012","unstructured":"Budin-Lj\u00f8sne I (2012) A review of ethical frameworks for the disclosure of individual research results in population-based genetic and genomic research. Research Ethics 8:25\u201342. https:\/\/doi.org\/10.1177\/1747016111435576","journal-title":"Research Ethics"},{"issue":"3","key":"536_CR13","doi-asserted-by":"publisher","first-page":"241","DOI":"10.1089\/bio.2015.0115","volume":"14","author":"I Budin-Ljosne","year":"2016","unstructured":"Budin-Ljosne I, Mascalzoni D, Soini S, Machado H, Kaye J, Bentzen HB, Rial-Sebbag E, D\u2019Abramo F, Witt M, Schamps G, Katic V, Krajnovic D, Harris JR (2016) Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe? Biopreserv Biobank 14(3):241\u2013248. https:\/\/doi.org\/10.1089\/bio.2015.0115","journal-title":"Biopreserv Biobank"},{"issue":"3","key":"536_CR14","doi-asserted-by":"publisher","first-page":"421","DOI":"10.1101\/gr.127845.111","volume":"22","author":"CA Cassa","year":"2012","unstructured":"Cassa CA, Savage SK, Taylor PL, Green RC, McGuire AL, Mandl KD (2012) Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibility. Genome Res 22(3):421\u2013428. https:\/\/doi.org\/10.1101\/gr.127845.111","journal-title":"Genome Res"},{"issue":"3","key":"536_CR15","doi-asserted-by":"publisher","first-page":"248","DOI":"10.1038\/ejhg.2012.130","volume":"21","author":"GM Christenhusz","year":"2013","unstructured":"Christenhusz GM, Devriendt K, Dierickx K (2013) To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts. Eur J Hum Genet 21(3):248\u2013255. https:\/\/doi.org\/10.1038\/ejhg.2012.130","journal-title":"Eur J Hum Genet"},{"issue":"3","key":"536_CR16","doi-asserted-by":"publisher","first-page":"780","DOI":"10.1353\/hpu.0.0345","volume":"21","author":"B Chung","year":"2010","unstructured":"Chung B, Jones L, Dixon EL, Miranda J, Wells K (2010) Community partners in care steering council. Using a community partnered participatory research approach to implement a randomized controlled trial: planning community partners in care. J Health Care Poor Underserved 21(3):780\u2013795. https:\/\/doi.org\/10.1353\/hpu.0.0345","journal-title":"J Health Care Poor Underserved"},{"key":"536_CR17","doi-asserted-by":"publisher","unstructured":"Committee to Review the Clinical and Translational Science Awards Program at the National Center for Advancing Trans-lational Sciences, & Institute of Medicine (2013) The CTSA program at NIH: Opportunities for advancing clinical and translational research. National Academies Press. https:\/\/doi.org\/10.17226\/18323","DOI":"10.17226\/18323"},{"issue":"1","key":"536_CR18","doi-asserted-by":"publisher","first-page":"156","DOI":"10.5604\/12321966.1141387","volume":"22","author":"J Domaradzki","year":"2015","unstructured":"Domaradzki J (2015) Patient rights, risk, and responsibilities in the genetic era \u2013 a right to know, a right not to know, or a duty to know? Ann Agric Environ Med 22(1):156\u2013162. https:\/\/doi.org\/10.5604\/12321966.1141387","journal-title":"Ann Agric Environ Med"},{"issue":"1","key":"536_CR19","doi-asserted-by":"publisher","first-page":"52","DOI":"10.1093\/jlb\/lst001","volume":"1","author":"R Dresser","year":"2014","unstructured":"Dresser R (2014) Public preferences and the challenge to genetic research policy. J Law Biosci 1(1):52\u201367. https:\/\/doi.org\/10.1093\/jlb\/lst001","journal-title":"J Law Biosci"},{"issue":"1","key":"536_CR20","doi-asserted-by":"publisher","first-page":"1","DOI":"10.20541\/beonline.2016.0006","volume":"3","author":"C Ewuoso","year":"2016","unstructured":"Ewuoso C (2016) A Systematic Review of the Management of Incidental Findings in Genomic Research. Beonline 3(1):1\u201321. https:\/\/doi.org\/10.20541\/beonline.2016.0006","journal-title":"Beonline"},{"issue":"3","key":"536_CR21","doi-asserted-by":"publisher","first-page":"261","DOI":"10.1038\/ejhg.2012.179","volume":"21","author":"FM Facio","year":"2013","unstructured":"Facio FM, Eidem H, Fisher T, Brooks S, Linn A, Kaphingst KA, Biesecker LG, Biesecker BB (2013) Intentions to receive individual results from whole-genome sequencing among participants in the ClinSeq study. Eur J Hum Genet 21(3):261\u2013265. https:\/\/doi.org\/10.1038\/ejhg.2012.179","journal-title":"Eur J Hum Genet"},{"issue":"5","key":"536_CR22","doi-asserted-by":"publisher","first-page":"530","DOI":"10.1038\/ejhg.2017.21","volume":"25","author":"K Fiallos","year":"2017","unstructured":"Fiallos K, Applegate C, Mathews DJ, Bollinger J, Bergner AL, James CA (2017) Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease. Eur J Hum Genet 25(5):530\u2013537. https:\/\/doi.org\/10.1038\/ejhg.2017.21","journal-title":"Eur J Hum Genet"},{"key":"536_CR23","doi-asserted-by":"publisher","DOI":"10.4135\/9781446282243","author":"U Flick","year":"2014","unstructured":"Flick U (2014) The SAGE handbook of qualitative data analysis. SAGE Publications Ltd. https:\/\/doi.org\/10.4135\/9781446282243","journal-title":"SAGE Publications Ltd"},{"key":"536_CR24","doi-asserted-by":"publisher","first-page":"451","DOI":"10.1038\/508451a","volume":"508","author":"G Ginsburg","year":"2014","unstructured":"Ginsburg G (2014) Gather and use genetic data in health care. Nature 508:451\u2013453. https:\/\/doi.org\/10.1038\/508451a","journal-title":"Nature"},{"issue":"6","key":"536_CR25","doi-asserted-by":"publisher","first-page":"821","DOI":"10.1089\/gtmb.2010.0066","volume":"14","author":"C Heaney","year":"2010","unstructured":"Heaney C, Tindall G, Lucas J, Haga SB (2010) Researcher practices on returning genetic research results. Genet Test Mol Biomarkers 14(6):821\u2013827. https:\/\/doi.org\/10.1089\/gtmb.2010.0066","journal-title":"Genet Test Mol Biomarkers"},{"issue":"1","key":"536_CR26","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1186\/s12910-016-0096-2","volume":"17","author":"B Hofmann","year":"2016","unstructured":"Hofmann B (2016) Incidental findings of uncertain significance: To know or not to know - that is not the question. BMC Med Ethics 17(1):13. https:\/\/doi.org\/10.1186\/s12910-016-0096-2","journal-title":"BMC Med Ethics"},{"issue":"2","key":"536_CR27","doi-asserted-by":"publisher","first-page":"82","DOI":"10.1080\/23294515.2017.1287786","volume":"8","author":"L Jamal","year":"2017","unstructured":"Jamal L, Robinson JO, Christensen KD, Blumenthal-Barby J, Slashinski MJ, Perry DL, Vassy JL, Wycliff J, Green RC, McGuire AL (2017) When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing. AJOB Empir Bioeth 8(2):82\u201388. https:\/\/doi.org\/10.1080\/23294515.2017.1287786","journal-title":"AJOB Empir Bioeth"},{"key":"536_CR28","doi-asserted-by":"publisher","first-page":"831","DOI":"10.1097\/GIM.0b013e31818bb3ab","volume":"10","author":"D Kaufman","year":"2008","unstructured":"Kaufman D, Murphy J, Scott J, Hudson K (2008) Subjects matter: a survey of public opinions about a large genetic cohort study. Genet Med 10:831. https:\/\/doi.org\/10.1097\/GIM.0b013e31818bb3ab","journal-title":"Genet Med"},{"issue":"6","key":"536_CR29","doi-asserted-by":"publisher","first-page":"662","DOI":"10.1038\/ejhg.2017.10","volume":"25","author":"JN Kholer","year":"2017","unstructured":"Kholer JN, Turbitt E, Biesecker BB (2017) Personal utility in genomic testing: a systematic literature review. Eur J Hum Genet 25(6):662\u2013668. https:\/\/doi.org\/10.1038\/ejhg.2017.10","journal-title":"Eur J Hum Genet"},{"issue":"9","key":"536_CR30","doi-asserted-by":"publisher","first-page":"553","DOI":"10.1038\/nrg3960","volume":"16","author":"BM Knoppers","year":"2015","unstructured":"Knoppers BM, Zawati MH, Senecal K (2015) Return of genetic testing results in the era of whole-genome sequencing. Nat Rev Genet 16(9):553\u2013559. https:\/\/doi.org\/10.1038\/nrg3960","journal-title":"Nat Rev Genet"},{"issue":"3","key":"536_CR31","doi-asserted-by":"publisher","first-page":"374","DOI":"10.1097\/acm.0000000000001200","volume":"92","author":"RG Kost","year":"2017","unstructured":"Kost RG, Leinberger-Jabari A, Evering TH, Holt PR, Neville-Williams M, Vasquez KS, Coller BS, Tobin JN (2017) Helping basic scientists engage with community partners to enrich and accelerate translational research. Academic Medicine 92(3):374\u2013379. https:\/\/doi.org\/10.1097\/acm.0000000000001200","journal-title":"Academic Medicine"},{"issue":"3","key":"536_CR32","doi-asserted-by":"publisher","first-page":"184","DOI":"10.1089\/gtmb.2016.0397","volume":"21","author":"G L\u00e1zaro-Mu\u00f1oz","year":"2017","unstructured":"L\u00e1zaro-Mu\u00f1oz G, Conley JM, Davis AM, Prince AER, Cadigan RJ (2017) Which Results to Return: Subjective Judgments in Selecting Medically Actionable Genes. Genet Test Mol Biomarkers 21(3):184\u2013194. https:\/\/doi.org\/10.1089\/gtmb.2016.0397","journal-title":"Genet Test Mol Biomarkers"},{"issue":"1","key":"536_CR33","doi-asserted-by":"publisher","first-page":"109","DOI":"10.1093\/bmb\/ldx009","volume":"122","author":"MP Mackley","year":"2017","unstructured":"Mackley MP, Fletcher B, Parker M, Watkins H, Ormondroyd E (2017) Expect the unexpected: screening for secondary findings in clinical genomics research. Br Med Bull 122(1):109\u2013122. https:\/\/doi.org\/10.1093\/bmb\/ldx009","journal-title":"Br Med Bull"},{"issue":"4","key":"536_CR34","doi-asserted-by":"publisher","first-page":"258","DOI":"10.1016\/j.atherosclerosis.2016.08.034","volume":"15","author":"TA Manolio","year":"2013","unstructured":"Manolio TA, Chisholm RL, Ozenberger B, Roden DM, Williams MS, Wilson R et al (2013) Implementing genomic medicine in the clinic: the future is here. Genet Med 15(4):258\u201367. https:\/\/doi.org\/10.1016\/j.atherosclerosis.2016.08.034","journal-title":"Genet Med"},{"key":"536_CR35","doi-asserted-by":"publisher","unstructured":"Manolio TA, Abramowicz M, Al-Mulla F, Anderson W, Balling R, Berger AC, Bleyl S, Chakravarti A et al (2015) Global implementation of genomic medicine: we are notalone. Sci Transl Med 7(290):290ps13. https:\/\/doi.org\/10.1126\/scitranslmed.aab0194","DOI":"10.1126\/scitranslmed.aab0194"},{"key":"536_CR36","doi-asserted-by":"publisher","unstructured":"Matthijs G, Souche E, Alders M, Corveleyn A, Eck S, Feenstra I, Race V, Sistermans E, Sturm M, Weiss M, Yntema H, Bakker E, Scheffer H, Bauer P (2016) Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies. Genet Med Mar;19(3):283\u2013293. doi: https:\/\/doi.org\/10.1038\/gim.2016.109.","DOI":"10.1038\/gim.2016.109"},{"issue":"6","key":"536_CR37","doi-asserted-by":"publisher","first-page":"475","DOI":"10.1177\/1077800410364740","volume":"16","author":"JA Maxwell","year":"2010","unstructured":"Maxwell JA (2010) Using Numbers in Qualitative Research. Qual Inq 16(6):475\u2013482. https:\/\/doi.org\/10.1177\/1077800410364740","journal-title":"Qual Inq"},{"issue":"5","key":"536_CR38","doi-asserted-by":"publisher","first-page":"199","DOI":"10.1016\/j.tig.2009.12.007","volume":"26","author":"AL McGuire","year":"2010","unstructured":"McGuire AL, Lupski JR (2010) Personal genome research\u202f: what should the participant be told? Trends in Genetics\u202f: TIG 26(5):199\u2013201. https:\/\/doi.org\/10.1016\/j.tig.2009.12.007","journal-title":"Trends in Genetics : TIG"},{"issue":"5","key":"536_CR39","doi-asserted-by":"publisher","first-page":"719","DOI":"10.1101\/gr.170514.113","volume":"24","author":"AL McGuire","year":"2014","unstructured":"McGuire AL, Knoppers BM, MnH Z, Clayton EW (2014) Can I be sued for that? Liability risk and the disclosure of clinically significant genetic research findings. Genome Res 24(5):719\u2013723. https:\/\/doi.org\/10.1101\/gr.170514.113","journal-title":"Genome Res"},{"issue":"1","key":"536_CR40","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1038\/ejhg.2015.58","volume":"24","author":"A Middleton","year":"2016","unstructured":"Middleton A, Morley KI, Bragin E, Firth HV, Hurles ME, Wright CF, Parker M (2016) Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research. Eur J Hum Genet 24(1):21\u201329. https:\/\/doi.org\/10.1038\/ejhg.2015.58","journal-title":"Eur J Hum Genet"},{"issue":"2","key":"536_CR41","doi-asserted-by":"publisher","first-page":"175","DOI":"10.1111\/add.12408","volume":"109","author":"J Neale","year":"2014","unstructured":"Neale J, Miller P, West R (2014) Reporting quantitative information in qualitative research: guidance for authors and reviewers. Addiction 109(2):175\u2013176. https:\/\/doi.org\/10.1111\/add.12408","journal-title":"Addiction"},{"key":"536_CR42","volume-title":"Social research methods : qualitative and quantitative approaches","author":"WL Neuman","year":"2011","unstructured":"Neuman WL (2011) Social research methods\u202f: qualitative and quantitative approaches. Allyn & Bacon, Boston"},{"key":"536_CR43","doi-asserted-by":"publisher","first-page":"348","DOI":"10.1186\/s12967-015-0704-9","volume":"13","author":"C Pattaro","year":"2015","unstructured":"Pattaro C, Gogele M, Mascalzoni D, Melotti R, Schwienbacher C, De Grandi A, Foco L, D\u2019Elia Y, Linder B, Fuchsberger C, Minelli C, Egger C, Kofink LS, Zanigni S, Schafer T, Facheris MF, Smarason SV, Rossini A, Hicks AA, Weiss H, Pramstaller PP (2015) The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results. J Transl Med 13:348. https:\/\/doi.org\/10.1186\/s12967-015-0704-9","journal-title":"J Transl Med"},{"key":"536_CR44","doi-asserted-by":"publisher","first-page":"112","DOI":"10.1186\/s12910-020-00549-4","volume":"21","author":"D Ralefala","year":"2020","unstructured":"Ralefala D, Kasule M, Wonkam A, Matshaba M, de Vries J (2020) Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research? BMC Med Ethics 21:112. https:\/\/doi.org\/10.1186\/s12910-020-00549-4","journal-title":"BMC Med Ethics"},{"issue":"1","key":"536_CR45","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1167\/tvst.5.1.3","volume":"5","author":"E Souzeau","year":"2016","unstructured":"Souzeau E, Burdon KP, Mackey DA, Hewitt AW, Savarirayan R, Otlowski M, Craig JE (2016) Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research. Transl vis Sci Technol 5(1):3\u20133. https:\/\/doi.org\/10.1167\/tvst.5.1.3","journal-title":"Transl vis Sci Technol"},{"key":"536_CR46","doi-asserted-by":"publisher","unstructured":"Stark Z, Schofield D, Martyn M, Rynehart L, Shrestha R, Alam K, Lunke S, Tan TY, Gaff CL, White SM (2019) Does genomic sequencing early in the diagnostic trajectory make a difference? A follow\u2010up study of clinical outcomes and cost\u2010effectiveness. Genetics in Medicine 21(1):173\u2013180. https:\/\/doi.org\/10.1038\/s41436-018-0006-8","DOI":"10.1038\/s41436-018-0006-8"},{"issue":"19","key":"536_CR47","doi-asserted-by":"publisher","first-page":"2190","DOI":"10.4045\/tidsskr.12.0078","volume":"132","author":"KS Steinsbekk","year":"2012","unstructured":"Steinsbekk KS, Solberg B (2012) Should genetic findings from genome research be reported back to the participants? Tidsskr nor Laegeforen 132(19):2190\u20132193","journal-title":"Tidsskr nor Laegeforen"},{"key":"536_CR48","doi-asserted-by":"publisher","first-page":"535","DOI":"10.1038\/s41431-018-0311-3","volume":"27","author":"A Thorogood","year":"2019","unstructured":"Thorogood A, Dalp\u00e9 G, Knoppers B (2019) Return of individual genomic research results: are laws and policies keeping step? Eur J Hum Genet 27:535\u2013546. https:\/\/doi.org\/10.1038\/s41431-018-0311-3","journal-title":"Eur J Hum Genet"},{"issue":"2","key":"536_CR49","doi-asserted-by":"publisher","first-page":"153","DOI":"10.1080\/14636778.2018.1469976","volume":"37","author":"A Urban","year":"2018","unstructured":"Urban A, Schweda M (2018) Clinical and personal utility of genomic high-throughput technologies: perspectives of medical professionals and affected persons. New Genetics and Society 37(2):153\u2013173. https:\/\/doi.org\/10.1080\/14636778.2018.1469976","journal-title":"New Genetics and Society"},{"key":"536_CR50","doi-asserted-by":"crossref","unstructured":"van El CG, Cornel MC, Borry P, Hastings RJ, Fellmann F, Hodgson SV, Howard HC, Cambon-Thomsen A, Knoppers BM, Meijers-Heijboer H, Scheffer H, Tranebjaerg L, Dondorp W, de Wert GMWR, Public E, Professional Policy C (2013) Whole-genome sequencing in health care. Recommendations of the European Society of Human Genetics. European journal of human genetics : EJHG 21 Suppl 1 (Suppl 1):S1-S5","DOI":"10.1038\/ejhg.2013.46"},{"key":"536_CR51","doi-asserted-by":"publisher","first-page":"479","DOI":"10.1007\/s13347-015-0204-0","volume":"28","author":"E Vayena","year":"2015","unstructured":"Vayena E, Tasioulas J (2015) \u201cWe the Scientists\u201d: a Human Right to Citizen Science. Philos Technol 28:479\u2013485. https:\/\/doi.org\/10.1007\/s13347-015-0204-0","journal-title":"Philos Technol"},{"issue":"3","key":"536_CR52","doi-asserted-by":"publisher","first-page":"320","DOI":"10.1001\/jama.2009.1033","volume":"302","author":"K Wells","year":"2009","unstructured":"Wells K, Jones L (2009) \u201cResearch\u201d in community-partnered, participatory research. JAMA 302(3):320\u2013321. https:\/\/doi.org\/10.1001\/jama.2009.1033","journal-title":"JAMA"},{"issue":"3","key":"536_CR53","doi-asserted-by":"publisher","first-page":"440","DOI":"10.1111\/jlme.12288","volume":"43","author":"SM Wolf","year":"2015","unstructured":"Wolf SM, Branum R, Koenig BA, Petersen GM, Berry SA, Beskow LM, Daly MB, Fernandez CV, Green RC, LeRoy BS, Lindor NM, O\u2019Rourke PP, Breitkopf CR, Rothstein MA, Van Ness B, Wilfond BS (2015) Returning a Research Participant\u2019s Genomic Results to Relatives: Analysis and Recommendations. J Law Med Ethics 43(3):440\u2013463. https:\/\/doi.org\/10.1111\/jlme.12288","journal-title":"J Law Med Ethics"},{"key":"536_CR54","doi-asserted-by":"publisher","first-page":"1037","DOI":"10.1038\/jhg.2017.81","volume":"62","author":"K Yamamoto","year":"2017","unstructured":"Yamamoto K, Hachiya T, Fukushima A, Nakaya N, Okayama A, Tanno K, Aizawa F, Tokutomi T, Hozawa A, Shimizu A (2017) Population-based biobank participants\u2019 preferences for receiving genetic test results. J Hum Genet 62:1037. https:\/\/doi.org\/10.1038\/jhg.2017.81","journal-title":"J Hum Genet"},{"issue":"11","key":"536_CR55","doi-asserted-by":"publisher","first-page":"1139","DOI":"10.1038\/s10038-018-0494-z","volume":"63","author":"K Yamamoto","year":"2018","unstructured":"Yamamoto K, Shimizu A, Aizawa F, Kawame H, Tokutomi T, Fukushima A (2018) A comparison of genome cohort participants\u2019 genetic knowledge and preferences to receive genetic results before and after a genetics workshop. J Hum Genet 63(11):1139\u20131147. https:\/\/doi.org\/10.1038\/s10038-018-0494-z","journal-title":"J Hum Genet"}],"container-title":["Journal of Community Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12687-021-00536-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s12687-021-00536-1\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12687-021-00536-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,10,27]],"date-time":"2021-10-27T16:49:20Z","timestamp":1635353360000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s12687-021-00536-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,7,9]]},"references-count":55,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2021,10]]}},"alternative-id":["536"],"URL":"https:\/\/doi.org\/10.1007\/s12687-021-00536-1","relation":{},"ISSN":["1868-310X","1868-6001"],"issn-type":[{"value":"1868-310X","type":"print"},{"value":"1868-6001","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,7,9]]},"assertion":[{"value":"14 October 2020","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"6 June 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 July 2021","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Disclaimer"}}]}}