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               Financial support and sponsorship
               None.


               Conflicts of interest
               All authors declared that there are no conflicts of interest.


               Ethical approval and consent to participate
               The  Pilot  and  Main  Phases  of  the  HKGP  and  all  related  studies  in  the  HKGP  were  covered  by  ethics
               approvals  granted  by  the  Central  Institutional  Review  Board,  the  University  of  Hong  Kong/Hospital
               Authority  Hong  Kong  West  Cluster,  the  Joint  Chinese  University  of  Hong  Kong/New  Territories  East
               Cluster, and the Department of Health (HKGP-2021-001, HKGP-2022-001, UW 21-413, 2021.423, LM 257/
               2021). The  study  followed  the  principles  set  out  in  the  Declaration  of  Helsinki.  All  participants  were
               informed  of the  study’s  objectives  and  data  confidentiality  standards  and  provided  written
               informed consent to participate in the focus group meetings.


               Consent for publication
               Written informed consent for publication was obtained from all participants.


               Copyright
               © The Author(s) 2023.



               REFERENCES
               1.       Middleton A, Milne R, Thorogood A, et al. Attitudes of publics who are unwilling to donate DNA data for research. Eur J Med Genet
                   2019;62:316-23.  DOI  PubMed  PMC
               2.       Dheensa S, Lucassen A, Fenwick A. Fostering trust in healthcare: participants’ experiences, views, and concerns about the 100,000
                   genomes project. Eur J Med Genet 2019;62:335-41.  DOI  PubMed
               3.       Middleton A, Milne R, Almarri MA, et al. Global public perceptions of genomic data sharing: what shapes the willingness to donate
                   DNA and health data? Am J Hum Genet 2020;107:743-52.  DOI  PubMed  PMC
               4.       Middleton A, Parry V, Borra J, Orviss K. A public backlash towards genomics is a risk all of us working in genomics must share.
                   Lancet Reg Health Eur 2022;15:100347.  DOI  PubMed  PMC
               5.       Chu ATW, Fung JLF, Tong AHY, et al. Potentials and challenges of launching the pilot phase of Hong Kong Genome Project. J
                   Transl Genet Genom 2022;6:290-303.  DOI
               6.       Hong Kong Genome Institute. Strategic Plan 2022-25. 2022. Available from: https://hkgp.org/wp-content/uploads/2022/07/HKGI-
                   Strategic-Plan-2022-25.pdf [Last accessed on 22 March 2023].
               7.       Clarke V, Braun V, Hayfield N. Thematic analysis. In: Smith J, editor. Qualitative psychology: a practical guide to research methods.
                   London: Sage Publications Ltd; 2015. pp. 222-48. Available from: https://www.torrossa.com/en/resources/an/5018480#page=233
                   [Last accessed on 20 Mar 2023].
               8.       Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Meth
                   2017;16:160940691773384.  DOI
               9.       Lewis C, Sanderson S, Hill M, et al. Parents’ motivations, concerns and understanding of genome sequencing: a qualitative interview
                   study. Eur J Hum Genet 2020;28:874-84.  DOI  PubMed  PMC
               10.      Mackley MP, Blair E, Parker M, Taylor JC, Watkins H, Ormondroyd E. Views of rare disease participants in a UK whole-genome
                   sequencing study towards secondary findings: a qualitative study. Eur J Hum Genet 2018;26:652-9.  DOI  PubMed  PMC
               11.      Berrios C, James CA, Raraigh K, et al. Enrolling genomics research participants through a clinical setting: the impact of existing
                   clinical relationships on informed consent and expectations for return of research results. J Genet Couns 2018;27:263-73.  DOI
                   PubMed  PMC
               12.      Anderson JA, Meyn MS, Shuman C, et al. Parents perspectives on whole genome sequencing for their children: qualified enthusiasm?
                   J Med Ethics 2017;43:535-9.  DOI  PubMed
               13.      Chung CCY, Chu ATW, Chung BHY. Rare disease emerging as a global public health priority. Front Public Health 2022;10:1028545.
                   DOI  PubMed  PMC
               14.      Sanderson SC, Lewis C, Hill M, et al. Decision-making, attitudes, and understanding among patients and relatives invited to undergo
                   genome sequencing in the 100,000 Genomes Project: a multisite survey study. Genet Med 2022;24:61-74.  DOI  PubMed
               15.      Stiles D, Appelbaum PS. Cases in precision medicine: concerns about privacy and discrimination after genomic sequencing. Ann
                   Intern Med 2019;170:717-21.  DOI  PubMed  PMC
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