Abstract
The Welfare Genome Project (WGP) provided 1,000 healthy Korean volunteers with detailed genetic and health reports to test the social perception of integrating personal genetic and healthcare data at a large-scale. WGP was launched in 2016 in the Ulsan Metropolitan City as the first large-scale genome project with public participation in Korea. The project produced a set of genetic materials, genotype information, clinical data, and lifestyle survey answers from participants aged 20–96. As compensation, the participants received a free general health check-up on 110 clinical traits, accompanied by a genetic report of their genotypes followed by genetic counseling. In a follow-up survey, 91.0% of the participants indicated that their genetic reports motivated them to improve their health. Overall, WGP expanded not only the general awareness of genomics, DNA sequencing technologies, bioinformatics, and bioethics regulations among all the parties involved, but also the general public’s understanding of how genome projects can indirectly benefit their health and lifestyle management. WGP established a data construction framework for not only scientific research but also the welfare of participants. In the future, the WGP framework can help lay the groundwork for a new personalized healthcare system that is seamlessly integrated with existing public medical infrastructure.
Highlights
Next-generation sequencing technologies have promoted a variety of personal genome projects (Ball et al, 2012, 2014; Oleksyk et al, 2015; Walter et al, 2015; Cho et al, 2016) aiming to map and analyze whole genome information concerning personal characteristics, population structure, disease risk, and even ancestry prediction (Supplementary Table 1)
The first shortcoming was the lack of genetic counselors who could perform a consultation at the recruiting stage and later interpret and explain the genetic report results to the participants at the report stage
While general practitioners can partially fill in the counseling role, their genetic interpretations may lack depth. This becomes even of higher importance when we consider the recent estimates (2006–2020), where the general population recruited to omics projects in most studies (64%) does not have a sufficient level of knowledge about genomics (Calabrò et al, 2020)
Summary
Next-generation sequencing technologies have promoted a variety of personal genome projects (Ball et al, 2012, 2014; Oleksyk et al, 2015; Walter et al, 2015; Cho et al, 2016) aiming to map and analyze whole genome information concerning personal characteristics, population structure, disease risk, and even ancestry prediction (Supplementary Table 1). The project collected and banked genomic, clinical, and lifestyle data from 1,000 healthy volunteers and provided them with a combined genetic and health information service. The generation of personal genetic reports (PGR), screening for common disease risks, physical characteristics, drug responses, and rare diseaseassociated variants, were carried out by external genomics companies (Supplementary Tables 2–5). Jeon et al (2020) sequenced the whole genome of 696 out of 1,000 samples banked by WGP and used the 79 quantitative clinical traits to investigate genome-wide associations between the variants and the clinical information Another application demonstrated by the study was the development of a Korean panel of normals for cancer genomics researches, which is an invaluable resource when a matched healthy control from the same individual is not available (e.g., leukemia). The publication by Jeon et al (2020) is just a first example of WGP samples being successfully used for future research
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