[20 years after the Human Genome Project,] many of the ethical, legal and social implications of genome research — including questions of privacy, informed consent and equitable representation of researchers and participants — remain unresolved. Moreover, free and open access to genome data remains unevenly implemented.
[Recently,] researchers pointed out the problems caused by lack of accessibility to coronavirus genomes in the middle of a pandemic. Researchers, funders and journals will need to address these issues if they are to fulfil the promises of the Human Genome Project and to better understand diseases and improve diagnoses and treatments.
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At this milestone anniversary, the genomics community — including funders, journals, researchers and participants from around the world — needs to recommit to open data sharing. At the same time, researchers must work in closer partnership with participants — devoting more time to engaging, building trust, listening and acting on concerns. This must be seen as a necessary part of genomics research, and will be key to its future.
As has been seen repeatedly during the pandemic, rapid data sharing can provide massive benefits to science and, through science, to all of society. It’s time to shore up that foundation and improve sharing practices — but always with equity and respect.
