Selling direct-to-consumer epigenetic tests: are we ready?

This article in Nature Reviews Genetics discusses the ethical and legal ramifications of direct-to-consumer epigenetic tests, a new trend on track to become as popular as other genetics tests, such as 23andme. Several of the issues with tests like 23andme are also prevalent with new epigenetic tests, including the very real possibility of the general public being misinformed of the medical and practical utility of these tests. These tests, which are not currently FDA approved, are advertised to help consumers improve their health, without really explaining how complex epigenetics are. This can lead to consumers misinterpreting results, or not truly understanding what they are giving consent for.

These tests may also make sensitive information that was not previously detectable by other genetic tests more available, including information about an individual's lifestyle choices, social lives, and the conditions in which they grew up. The privacy of consumers is obviously at risk, as with other genetic tests. The article brings up several cases where this information could be used against people such as immigrants, criminals, or unsuspecting teenagers whose parents believe are doing drugs. How much importance should be placed on the results of these tests, and under what conditions can they ethically be used? Currently, these tests do not provide the consumer with information about how their information can be shared with other companies or legal authorities. Past laws, such as the US Genetic Information Nondiscrimination Act (2008), prevent the use of genetic information as grounds for discrimination, but these laws do not currently cover epigenetic information.  Lastly, the article mentions the can of worms that could be opened by insurance companies using epigenetic age to determine life insurance rates, as has been proposed by an insurance company called Yousurance.
It seems apparent that direct-to-consumer epigenetic tests are becoming increasingly popular, and it is essential the associated ethical and legal risks be considered when selling them to the public.

https://www.nature.com/articles/s41576-020-0215-2
Rachel Nelson, Journal Potluck 2/14/20