DNA and Data Privacy

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TRANSCRIPT

Carmen Tang 

00:08 DNA and Data Privacy

Since the outbreak of COVID-19, this pandemic has escalated into a global crisis and governments around the world have taken a lot of steps to contain this aggressive virus.

Other than quarantine measures, mass COVID-19 testing involves collection of biometric data. Biometric data includes the physiological data which individuals are born with and behavioral data developed by an individual after birth. This includes DNA samples, fingerprints and facial images.

00:41 Why DNA is sensitive data?

DNA is known to reveal the congenital conditions of an individual, including gender and ethnic origins. Experts believe that DNA data may also uncover one’s mental health conditions and even personality traits.

Therefore, any wrongful disclosure of DNA data could lead to unintended or unauthorized identification of individuals, or even discrimination based on the results of analyzing DNA data.

Due to the sensitive nature of DNA, precautions must be taken to protect such data. We should make informed decisions when deciding whether we let our DNA data be collected.

01:25 COVID-19 testing and DNA

There are various underlying concerns related to the COVID-19 test undertaken by the Hong Kong Government. Participants would undergo a throat swab and their saliva specimen would be sent to laboratories for testing. Studies show that up to 74% of DNA in saliva comes from white blood cells, which are an excellent source of high-quality genomic DNA. This means that a lot of intimate genetic information could be derived from your saliva specimen.

Privacy concerns include possibility of hacking if testing laboratories do not have strong data security. It may also be unclear who your DNA data would be transferred to. While many non-profit, research-based institutions may need DNA data for academic purposes, it is also possible that your DNA data might be disclosed to governmental authorities or for law enforcement use.

Therefore, it is not surprising that some citizens have reservations about such testing, considering the underlying data privacy risks.

02:37 Genetic testing kits and privacy concerns

The business of personal genetic-testing kits is booming at an unprecedented rate. Consumers will be able to take mail-in genetic tests at home, usually in the form of a cheek swab or saliva sample. They will be able to learn about their ancestry and health risks from the results.

While there are controversies as to the accuracy and reliability of these test results, the biggest risk involved in taking DNA tests is related to data privacy.

Some companies are more transparent about data sharing. When consumers sign up for the testing program, they are asked if they consent to their data being shared and used for research. However, not all companies are forthcoming in relation to their data privacy policy.

As a consumer, you should make sure you have considered the data privacy implications before you sign up for a DNA test.

• Transparency 03:32

Companies should inform each data subject on or before their DNA collection, the purpose for which their DNA data is to be used and collected.

They should also make clear to you who may access your DNA data and under what circumstances may such access be given.

For example, companies may let you choose whether your DNA data can be shared with research partners. The names of the research partners as well as the class of employees allowed to deal with the DNA data should be specified.

• Data security 04:03

Please remember to check whether the company has taken practical steps to ensure that DNA data is protected against unauthorized or accidental access, processing or loss. Given the sensitivity of DNA data, it is essential for companies to guard against risk of compromising and thieving of such data.

Security measures include regular evaluation of information and communications systems used to store and process the DNA.

DNA data should be encrypted in storage and when in transit. Further, access to DNA data should be restricted to authorized persons and only at need to know basis. All access should be recorded and logged.

• Use limitation 04:45

Companies must bear in mind that in general they are not allowed to use personal data collected for a new purpose without the express and voluntary consent from you, their data subjects.

In particular, DNA contains rich information about an individual’s physical health and even mental conditions. For example, DNA tests carried out as part of a health benefits plan offered by an employer should not be used by the employer to determine the employability of the employee.

05:17 Way forward

Globally, genetic testing kits are of growing popularity. Current legislation may not be able to cover loopholes created by new technological development in biometric data collection.

It is important for you – as a consumer – to be alert and be aware of your data privacy rights in order to safeguard your genetic information.

 

This video is for informational purposes only. Its contents do not constitute legal or professional advice.