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Opinion: We should address genetic data governance as we fight to find a COVID-19 vaccine

As the world rushes to develop a vaccine against COVID-19, geneticists are looking at our genes to understand the variation in disease severity. To do this, researchers are searching through DNA databases and cross-referencing them with COVID-19 cases, which can give deep insights into the pandemic.

As we do this, we must consider the implications for genetic privacy according to Ifeoma Ajunwa in her post in Scientific American. One of the key questions we need to consider is: how do we proceed with the ability to identify who is vulnerable and who is not.

While on one hand, we can use the genetic tests to help vulnerable patients stay safe, this however, creates difficulties in the workplace when companies could use the genetic test results to manage the risks for employees, such as controlling the activities of those most vulnerable. Businesses in the US may also the opportunity to use the genetic tests as a means of tailored insurance, offering rates according to individual genetic risk. And, while there are currently some legal protections against genetic discrimination and health privacy intrusions, the pandemic has led to the federal government to scale back some of the protections for the time being.

Although expanding the use of genetic data is for the greater good, testing could bring a host of privacy and economic harms. Consumer-genetics companies like 23andMe and Ancestry have assembled their own large-scale databases of US citizen’s genetic and health data to help identify genetic factors that predict COVID-19 susceptibility. Other companies are growing their databases for a range of purposes, including the NIH’s AllofUs program, and these developments indicate a need to appropriate data governance.

Recently, leaders from the biomedical research community proposed a voluntary code of conduct for organisations that are constructing or sharing their genetic databases. The public has the right to understand the risks of genetic databases and have a say over how their data is governed. To ascertain public expectations about genetic data governance, Ifeoma and colleagues surveyed over two thousand (2,020) individuals who are representative of the US population. They educated the respondents on the benefits and risks associated with DNA databases and asked how willing they would be to provide their DNA to such a database.

The team thought that people would be more willing to donate their data for finding a COVID-19 vaccine to a hospital or university compared with a tech or pharmaceutical company. Surprisingly, the team found a similar level of willingness from participants regardless of who owned the database. The most important thing to the individuals were on the kinds of data governance policies. Thus, in order to find a vaccine for COVID-19, we must have genetic data governance policies in place that inspire confidence and prompt the public to donate their data. Participants willingness increased most when they were told they had the ability to control how their data is stored and reused in the future, and likewise, one of the policies that reduced willingness was when the company intended to retain the data indefinitely without a specified date for destruction.

Now, in the midst of a global pandemic, should companies review their genetic data governance policies to help encourage participants to donate their data and help fight against the virus?

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