In 2008, the genetic DNA test was fashionable. Time magazine praised the invention as “absolutely revolutionary”, with the American Genomic Company 23andme leading the position.
23Andme had launched two years before with a simple premise: if I could know more about your DNA, you could understand your ancestry, your risk factors for health conditions and could even make sure your medical treatment was personalized.
Since then, millions of customers have used the company’s saliva test for analysis.
But almost 20 years later, and two years after the computer pirates obtained access to millions of their profiles, 23Andme have broken. The company declared bankruptcy in March.
So has the so -called genetic revolution delivered everything that promised?
Dr. Phillipp Bayer, an expert in bioinformatics, told SBS News: “It turns out that biology is always more complicated than we expected.”
“At that time, we did not know how much of these DNA pieces you can tell you about the disease or the propensity to the disease or the probability of developing some other disease in your life. We simply did not know.”
Bayer said there are always many more factors working to calculate these results, not just a single data point.
We do not understand much about the use of biological data to predict the future, and there have been unexpected impacts on its use.
The data could “commit”
Dr. Jan Charbonneau, an attached researcher at the Center for Law and Genetics at the University of Tasmania, spoke with SBS about the potential risks of genetic data.
She said that for some clients in the United States, the results of genetic data tests may have unexpected impacts on eligibility for health insurance.
“When he enrolls in health insurance through his company, he attests that he knows no genetic predisposition,” he said.
“If you have had a 23Andme test, that’s not part of your health history.
“But by saying no, thinking that he is maintaining his genetic results outside the official records, of course, that could compromise his health insurance later.”
In 2008, the United States government approved the Law of Non -Discrimination of Genetic Information, which protects against genetic discrimination in employment, a law that was extended to include health insurance plans a year later.
Ask for similar laws in Australia
In Australia, a group of doctors has been campaigning for similar legislation.
The Government announced in September 2024 that it would prohibit genetic discrimination in life insurance, but has not yet approved legislation.
The associated professor Julian Rait, vice president of the Australian Medical Association (AMA), says that the future of the prohibition is uncertain with the next federal elections.
“We hope that, in the new term of any government that can follow, we can advocate for the approval of that legislation and obviously promulgated so that people are better protected,” Rait told SBS News.
Rait says that he still believes that genetics and genomics will transform the health sector and should be incorporated into daily medical care.
But he says that people should consult their doctor when considering testing.
Privacy risks
Rait also said that genetic tests bring risks of cybersecurity and privacy concerns.
“It’s not just his own DNA. Somehow, he is also shared by many family members,” Rait said.
“There is the potential to expose the information that might not necessarily be for the comfort of all other family members.”
23 Andme clients are also asking questions about what to do with their data, now 23Andme has declared bankruptcy.
RAIT said there are concerns about data protection, with some data from the clients that appear on the dark website after 23 Andme experienced a data violation in 2023.
But it is the legitimate sale of the company’s assets as bankruptcy income that is also asking questions.
The company has said in a statement that the sale would not affect the way in which customer data is administered, but California attorney, where the company’s headquarters is located, warned customers to consider deleting their data.
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