DNA testing to check for risk of diseases such as cancer, Alzheimer’s: a satisfied customer, worried doctors
- People taking DNA tests are looking for more than their genetic ancestry; they send the results to third-party companies to find their susceptibility to disease
- A professor warns human genomics is still in its infancy, but one man who sought disease risk information talks about lifestyle changes he made as a result
Watching Alzheimer’s disease erode his grandfather’s sense of self was agonising for musician Sam Perry. “There is no love inside that person any more,” he says. “They can’t love you, or their wife, or their kids.”
Perry, whose grandfather died in the 1990s after a long struggle with the disease, vowed that he would not go the same way. So in March this year, he sent a DNA sample to 23andMe, a company that offers genetic ancestry testing, hoping he could find out whether he was at risk of developing Alzheimer’s, a leading cause of dementia and one of the top 10 causes of death in Hong Kong.
“The upsides sounded tangible and immediate – it would enable me to incorporate preventive practices into my life, whereas the downsides were purely hypothetical and extremely low-risk,” Perry says.
The California native requested to withhold his real name, out of a concern for the health insurance implications.
Perry is one of millions of people around the world who have submitted their DNA to private companies to find out more about their ancestry. Most are interested in finding out more about their family history, but in recent years a new trend has emerged, which has seen people attempting to use their genealogy results to learn whether they are susceptible to diseases such as cancer and other life-threatening illnesses.
“Your raw data actually contains more than just your ancestry information,” says Sarah Nelson, a research scientist in biostatistics at the University of Washington. “Some of them can have health-related information,” she explains, referring to the information revealed by unprocessed data from customer’s genomes that is included in genealogy reports.