4 min read
At every stage of our response to Covid-19, genomic science has powered our understanding, from developing quick at-home tests to tracking and containing variants.
Genomic science, an industry where the UK leads the world, has made staggering progress in the last twenty years. That progress has often been measured by the successful completion of government-led initiatives, from the US-backed Human Genome Project, to the UK’s 100,000 Genome Project.
These are national projects, but each of them has relied heavily on international cooperation. This spirit of international collaboration has helped translate these advances into medical interventions, from rapid genetic tests in pregnancy to diagnoses for some of the world’s rarest and least understood diseases.
At every stage of our response to Covid-19, too, genomic science has powered our understanding, from developing quick at-home tests to tracking and containing variants.
Two factors have underpinned the extraordinary success of genomic science in responding to the pandemic. The first has been a strong working relationship with the healthcare system. The second has been the comparative seamless international collaboration on which the scientific community relies.
Genomics is a science that has grown up alongside patients as willing volunteers and with scientists sharing expertise and technology across borders. Genomic scientists are guided by the ethics of informed consent and data security while laboratories are regulated to meet stringent international standards from the very start of the design process.
To maintain that consent, we must be able to trust scientists to remain above politics
Another area in which genomic science has made progress in recent years is in genetic testing in pregnancy. Non-invasive prenatal tests (NIPT) allow clinicians to test pregnant women for chromosomal abnormalities without additional risk of miscarriage. The tests have been rolled out across England from June of this year. Data privacy for patients is of pivotal importance.
The Chinese life science and genomics company, BGI Group, is one of the leading global private biotechnology companies. The company’s scientists went to Wuhan to collect samples when Covid broke out, and it developed a PCR test for the virus in January 2020. Its technology has fought diseases from Ebola to cancers.
Some of their tests have come under the spotlight recently, following the publication of a study co-conducted by BGI researchers using information from NIPT screening to identify maternal cancers.
Following two similar experiments in the US, researchers used data from patients who had consented for their data to be used in research and looked for indications that cancers could be present. The experiment was a success, and scientists were able to identify instances of cancer, allowing clinicians to diagnose cases much more quickly.
As with the US experiments, all data used in the study were pseudonymised, meaning that no personal information was provided, and the researchers could not know the identity of any patients. The scientific method relied on experiments being peer-reviewed, meaning that the anonymous data of genetic material underlying the experiment had to be stored for a period of time. This in turn led some commentators to claim that personal information had been mishandled.
In misinformation circulating between the media and overseas governments, BGI Group was described, fancifully, as a company “linked to the Chinese military”, and it was claimed that personal information was held in China’s GeneBank. Accusations were made that China was “stealing intimate data”. These claims were strongly denied by the company.
The Human Genome Organisation (HUGO), reflecting on lessons from the pandemic, highlighted the necessity of sharing sequences on open platforms.
In an open letter to the Human Genomics journal, the organisation wrote, “We should also look forward to the time when the pandemic has passed, and we are left with vast amounts of samples and data: these should be made available under conditions of global ethics and a model that advances genomics research equitably”.
Genomic science has already developed the ethical frameworks and information security processes that make HUGO’s vision of open genomic evidence feasible. For it to be made a reality, society must learn to understand and to trust those standards and processes.
Further advances in genomic science and its application in health care rely on our continued consent, individually and as a global society, to participate in research.
To maintain that consent, we must be able to trust scientists to remain above politics.
Lord St John of Bletso is a Crossbench peer.
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