The challenges of an exciting industry — pitfalls and self-regulation in consumer genetics

If you are a follower of the world of genetics and fitness/nutrition. You may have seen the recent, excellently researched and comprehensive article in STAT on the difficulties a potential consumer faces.

The world of consumer genetics is an industry that presents daily challenges. In giving any level of personal genetic information to the general public, there exists strict standards to which one must hold oneself, and crucially these standards have to be self-regulated.

It’s safe to say that attempting to drive forward an industry, one still very much in its’ infancy, while staying innovative, and living up to expectations is a 24-hour job but one that I, and the DNAFit team, are glad to be a part of.

We’re driven to help people better understand who they are, and how they are made, without barriers.

Recently, Rebecca Robbins at STAT put together her incredibly in-depth and commendably researched piece looking at 5 consumer genetic testing kits, pitting them against each other, with the aim of finding out if:

a) there was truth in what these reports said

b) they would explain why she was good at certain sports

c) all the companies relayed the same information pertaining to the genetic markers

d) the research was sound (this wasn’t explicitly stated but it became a topic of conversation once the genes underwent deeper investigation)

Firstly, I’m glad to say that at DNAFit we’re happy to be challenged — due to our highly scientific approach, code of practice, and principles of self-regulation. We take great precautions to never overstate what we do and always to uphold the highest scientific standards in the industry, so we are happy to come under any scrutiny necessary.

We don’t over-claim, so we don’t mind being challenged.

Rebecca found that there were indeed discrepancies between the companies related to a number of gene variants in their reports — a worrying turn of events for the industry as a whole. I should point out that I was unfamiliar with the two other companies mentioned in the STAT report, but upon examination, I am very disheartened at their evidence protocol.

For example, Rebecca found that the gene COL5A1 and the interpretation of her genotype in relation to tendon health varied dramatically between companies.

How can this be? To put it brutally — incorrect, or even lazy, interpretation of the published literature on behalf of the other companies in the article.

At DNAFit we indicate that the TT genotype correlates an increased predisposing impact for soft tissue injury, another test said that it meant a decreased impact.

Confusing, right? Same genotype, different interpretation.

To make matters more confusing, this discrepancy was shown across a further five gene results.

As a result, our team put together and sent to Rebecca a comprehensive review for the evidence of each variant, with references and quotes from the literature as to why we report the variant as we do, and indeed why the other companies interpretations are not supported by published data, or indeed misinterpreted. This was the 2000-word document Rebecca references in her piece:

“DNAFit sent me a 2,000-word document defending its interpretation of my genotypes. It even included quotes from scientific studies to bolster its interpretations — and to rebut the contradictory results I got from other companies.”

We didn’t choose to do this amount of work to just make sure we came out on top, we created this audit for Rebecca because it’s important that any company wanting to operate in the direct consumer industry holds itself to the strictest account, and at the very least should be able to not misinterpret a research paper!

Therein lies the problem with the industry as it stands today.

Since we began in 2013, many companies have been springing up left, right and centre, offering fitness genetic interpretations. My opinion is that new players in the market, with a limited understanding of the science, believe it’s a short-term quick win. Trust me, from personal experience — it’s not.

We are here for the long-term, and in this case, long-term means stringent self-regulation, heavy investment in research and a strict code of practice.

That’s why, last year, we called for an industry-wide take up of a code of practice for direct consumer fitness genetics. You can read of code of practice here.

How else can a consumer be expected to differentiate whether their choice of test has a ‘good’ protocol genetic data or ‘bad’ genetic data?

We have a firm protocol for including a gene variant in our report. Every SNP must be shown in multiple published peer-reviewed literature, be based on human studies only, and hold an easily modifiable environment or lifestyle change to support it. We also do not report on any variant which might also hold a serious medical impact if the user were to do their own external research.

We do this, amongst our other regulation processes, because the fact is, the industry of consumer genetics is largely unregulated. While it might seem easy to others to get away with unfounded claims and, say, talent identification, we know very well that an approach of this manner will only weaken the industry as whole.

We want to help people, and in order to do this, we have to back up everything we do with strong scientific research.

To this end, we set up the Exercise & Nutritional Genomics Research Centre to forward the industry with independent research, the first study of which was published earlier this year in the Biology of Sport, using our Power/Endurance training response algorithm to create a genetically-guided resistance training program, with some great early results. Our next studies, are now using a whole genome approach, to improve our understanding even further.

But back to what everyone really wants to hear about…

The author of the article rightly makes generalisations about consumer genetic tests for fitness and nutrition because she was presented with different information and interpretations, and it shouldn’t be that way. The headline is incendiary, using the word ‘fiasco’, but with good reason.

The truth is, the results given from the other companies were a fiasco. Even though I am proud DNAFit emerged as the sole company with the correct results, if others don’t adhere to the same standards it makes a mockery of the whole industry.

This is why DNAFit goes even further to help people understand their genetic report, and how to make them actionable in real life.

Applying this data is in the early stages of its’ development, and genetics is only one part of the picture — but an important part nonetheless.

How you are made (your genotype), how you currently are (your phenotype) and the actions you take (your environment/lifestyle) make up the entirety of who you are, so why not understand more about the genetic part of the equation?

We go so far as having a team of sports scientists providing consultations to anyone who isn’t sure about what their reports mean. We understand that it’s sometimes difficult to grasp the science, but I can guarantee you that after going through your report with a professional you’ll feel more comfortable about what it means and how to apply any actions to your fitness and nutrition choices.

The crux is that DNAFit does not, and will not, make the same claims as other consumer genetics companies — pertaining to identifying what are your best sports or what disease you’re predisposed to, and this was further exemplified by how the author even mentioned that when she contacted all the companies, we were the only ones willing to explain our recommendations.

Remarkably, since the piece, of the two other companies contacted about the conflicting results, one admitted it was wrong and the other has even ceased selling their product!

If this was the case, I would ask them what led them to think it was OK to market the product at all?

Some recommendations from your genotype may seem ‘boring’ or common sense, but I would rather be boring and truthful, than extrapolate the research in an incorrect or lazy manner to create a product. This may be the tip of the iceberg, but at least it’s the iceberg. What we’ve seen in this article from Rebecca are some companies that haven’t even found the iceberg.

DNAFit’s products empower our customers with personal knowledge about their genetics in relation to fitness or nutrition. This is not of interest to everyone, but if you want to better understand the ‘nature’ part of who you are when it comes to exercise and dietary response, it is most likely is. So let’s all make sure that the standards we ask of genetic fitness and nutrition suppliers, are of a strictly self-regulated, and correct level of evidence.

In short, as the industry has grown, so too have the companies looking for a quick win. I’m proud to say we aren’t one of those companies, and I thank STAT for taking the time to put together this report into the challenges facing the industry. I just hope that more companies will choose to self-regulate in the way we do, for the good of the entire industry, and the end consumer.