Options include requesting that data be removed from the 23andMe genetic services company platform
The Information and Privacy Commissioner of Alberta, Diane McLeod, is reminding Albertans to take steps to protect their personal information, in light of a recent bankruptcy filing in the United States.
Last month, the genetic services company 23andMe filed for bankruptcy in an American court. McLeod is taking this opportunity to inform Albertans about this matter and to encourage them to ensure their highly-sensitive personal information is protected from possible disclosure to an unknown source.
“Genetic information is one of the most sensitive types of personal information that exists,” said McLeod. “Advances in the processing of the human genome, along with the falling price of genetic sequencing, mean that virtually anyone can obtain information about their ancestry, risk of hereditary diseases, and even psychological and behavioural predispositions such as risk of depression or sensitivity to addiction. While this has the potential to enable great advances in treatment, it also makes genetic information a valuable and desired asset. Any breach of such sensitive personal information not only affects that individual, but also members of their extended biological family.”
The assets filed under the 23andMe bankruptcy include a vast amount of data derived from its genomic sequencing activities. Media reports indicate that 23andMe holds DNA samples where customers have chosen to leave them with the company and that it has received court approval for the sale of its assets, which include its data holdings.
“It is uncertain who will become the new owner of 23andMe and its assets, and what their intentions may be for the personal information obtained,” said McLeod. “In this type of situation, it is important for people to know that they have a number of options to protect any personal information held by 23andMe.”
Options include 23andMe users adjusting their settings to choose whether or not they wish to participate in research and share their data or participate in biobanking. They may also delete their account and genetic data on the 23andMe platform. This option is in the account settings under “23andMe” Data, “Permanently Delete Data.” Users can select options to delete both their account and their genetic data.
Requests to destroy physical DNA samples and additional queries can be sent through the 23andMe customer service portal: https://customercare.23andme.com/hc/en-us/requests/new.
In the past, the Office of the Information and Privacy Commissioner of Alberta has issued guidance on genetic testing and privacy for Albertan consumers. It can be found here.
Through the OIPC, the Information and Privacy Commissioner performs the responsibilities set out in Alberta’s three access to information and privacy laws, the Freedom of Information and Protection of Privacy Act, the Health Information Act, and the Personal Information Protection Act. The Commissioner operates independently of government.
For more information:
Elaine Schiman
communications@oipc.ab.ca
Communications Manager
Office of the Information and Privacy Commissioner of Alberta
Mobile: (587) 983-8766
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