Since DNAFit began in early 2013, the public understanding and appetite for personal genetic information, especially that which focuses specifically on fitness and nutrition markers, has grown exponentially. This consumer growth is mirrored in the ever-growing number of companies offering such services to the direct consumer, we’ve found at least 19 different companies offering products that report on genetic information related to sporting or fitness performance.
I’m thrilled to see such a movement towards sporting genomics in the mainstream, and I’m excited to see what the market can become as it develops. Some of these companies’ offerings are great, some are okay, but unfortunately there are a few that are just outright bad products.
Now, with this growing number of providers, we as an industry face a huge challenge. With many players on the field comes an unavoidable confusion in the market, especially as to the scientific standards upheld. How can a customer differentiate between ‘good’ or ‘bad’ scientific protocols?
This lack of an accepted ‘gold-standard’ threatens to degrade and bring down the entire industry. As the market leader here in the UK, at DNAFit we are constantly striving to uphold our own stringent code of practice when it comes to personal genetics, both internally and externally. We seek to set the industry’s highest standards in this innovative field, and now, with the growing interest from the consumer there has emerged an urgent need for an industry-wide acceptance of what should be expected from a company offering personal genetic information for fitness, sport, nutrition or health markers.
As a result, we propose to set out the following 10 point Personal Genetics Code of Practice, and call upon every company in the industry to strive to adhere to the same strict protocol. These are the key standards to which we should all adhere, without compromise:
- No direct-to-consumer (DTC) genetic testing for under-18s
Genetic tests should not be provided direct to consumers under the age of 18.
- No testing for talent identification or predicting sporting ability
DTC personal genetic testing should never be used as a predictive measure, nor as a means to identify which sport a customer should attempt or indeed even to influence the customer’s choice of fitness level or sporting goal. There exists no ethical or scientific basis upon which to support the use of genetic information in this way, and this should be clearly communicated to the customer.
- Provide detailed information about gene variants
All providers of DTC genetic testing should provide clear information to prospective customers about every gene variant included in the test.
- Provide a minimum evidence base for all reported gene variants
Variants should only be reported in a consumer test if there is a reasonable level of scientific consensus, based on human studies, showing their relevance to the test. The variants that are reported in a consumer test should be those that influence lifestyle changes from which health benefits may be derived.
- No misleading claims
DTC genetics companies should clearly state the limitations of fitness and nutrition genetics and make no exaggerated or misleading claims about the potential benefits of their product.
- State clearly that genetics are only one element in a fitness or nutrition regime
Recommended fitness or nutrition regimes must not be built solely on genetic results. Environmental factors play a more important role than genetics.
- Demonstrate strict laboratory & data protection standards
DTC genetics companies should disclose the location of the laboratory used to analyse samples to enable a customer to make an informed decision about the security of their DNA sample and the quality of the laboratory analysis.
- Ensure expert advice is available to explain results to customers
DTC genetics companies should have experts in their particular field available to explain results to customers.
- Be commercially transparent
If DTC genetics companies recommend or promote any additional products or services to their customers, such as nutritional supplements, they should clearly state if they have commercial relationships with third party suppliers.
- Customer consent should be mandatory before testing
Customers should be required to provide their formal consent to genetic testing and sign a declaration confirming their understanding of how their data will be used.
Personal genetics, in any field, is of course an emerging science. By the very nature of the industry, any company operating in the space will be naturally pushing the envelope, but the crucial mark must never be overstepped. It is in the interest of not only the end user, but also those with companies ourselves, that a strict standard of ethics and code of practice is adhered to. Without this we will be limited in our ability to further the industry and bring ever-advancing science to the end consumer.
It’s an incredibly important time for our industry, with big players such as 23andme having just reached their agreement with the FDA, we’re on the precipice of a new era. At DNAFit, we make it our strict promise to the customer and to ourselves that we will never overstep these boundaries set out, and I hope other companies in this space will do the same.