Regulation In Consumer Genetics
It’s no surprise that consumer genetics is an industry that needs regulation, or in some cases self-regulation as a minimum requirement. After all, companies are providing results and insights to crucial elements of information that need some assistance to be interpreted. Therefore, DNAFit would be an advocate for regulation. With it the consumer can be certain that the products they are buying has a duty of care associated to them.
It’s clear to me that a major issue that accompanied direct-to-consumer (DTC) genetics tests was that if there are no rules or boundaries within a framework that is clear to the consumer and professionals. Consumer genetics is based on a lot of science that can easily be misinterpreted. It is the duty of service providers like DNAFit to make the protection of consumers paramount, above everything else. The consumers are the reason that this industry even exists and therefore DTC genetics companies are not only the gatekeepers of very private information but the ones who tell consumers what they are looking at and how the science works.
In practice, DNAFit provides a service which is non-diagnostic in nature…so there is no direct health consequence to having this information BUT how do you, for example, the end user, our customers know when a company is providing a high quality product vs low. An example of this is our code of conduct; where we openly share the genes in our panel where others might not hence this is the type of clarify and openness that should be regulated.
I see DTC genetic testing from a different perspective. What genetic tests should be doing is innovating and changing how people view the industry. Genetics is a new industry with pros and cons regarding what is known and the science behind it.
On one hand it’s groundbreaking, revolutionary even and once it develops I believe that it will change how we see the world. On the other hand, is the fact that it is unregulated and filled with companies who may not present customers with conclusive, definite information.
Another key area is claims and the governance surrounding what an individual sells through the realm of digital and social media. I realise the importance of never overstating claims for the reasons of true and fair advertising practices. This is an area I now advocate strongly as it’s just not worth it.
Here at DNAFit we ask all of our external facing teams to be conscious about this and on many occasions ask for a signature to our internal policies around this topic.
While others find regulation limiting and that by regulating genetic testing you are banning it I have to disagree, as having a market that is growing and expanding at such a rate to stay unregulated would be to bring it into disrepute. DTC genetic testing companies must realise that if they do not abide by any rules then they will always be viewed as untrustworthy and results will not be taken seriously. It’s a need for the industry that we are wanting to last and continue to grow.
So as a start the team here at DNAFit have implemented our own self-regulating code, which you can watch here. Our self-regulation is based on consensus surrounding the SNPs we analyse and limiting ourselves based on scientific research and studies.
It’s important that our prospective clients and partners know all of the genes and SNPs that we test for have been tested on humans, are backed by no less than three clinical studies that prove what they do and are surrounded by a scientific consensus on how the expression of a certain affects our bodies. We do this because what regulation means to me is even more freedom. Why would you not want a regulated industry if you knew what you were doing was ethical? It simply makes no sense to be resistant. With regulation comes the legitimisation of a business. I see the DTC genetics industry becoming more competitive and contested, but under guidelines that, when adhered to, will instil belief within the consumers of these products. I am not necessarily talking about governmental regulation here but regulation so as to protect the consumers that keep the industry alive.
A recent consensus published in the Sports Medicine Journal concluded, among numerous items, that DTC genetic tests should not be used for talent identification in children. This is due to the lack of scientific research to concretely and absolutely state that talent identification is even valid. The main reason is because there remains a lack of guidelines and legislation in the consumer genetics industry. This problem could be solved by regulating the industry.
As DNAFit were already self-regulating we are pleased to say that the issue of this did not concern us, and this is how we continue to star ahead in a market that is fast growing.
The Internet has already created amazing opportunities for DTC companies to expand our client-base and empower people all over the world with their genetic information. But it doesn’t mean that the Internet cannot be regulated because we know that it can be. The DTC genetic test is still a physical entity that has to cross borders and we have seen how nations can enforce restrictions on the powers of the Internet within a legal framework. Regulation of DTC genetic testing doesn’t have to work within a strictly legal framework. It is important to realise that regulation can arise from within
My vision has grown over time and I don’t see the industry of genetics slowing down or becoming defunct. It is a reality that we all have to be aware of, turning a blind eye is not an option, and one that we need to adapt with. Regulating the field of consumer genetics would serve to improve the quality of the work being done and perhaps increase funding in these fields. By gaining more knowledge and information about genetics and operating as an entire body I believe that it would install trust in DTC genetics tests and instigate consumers to incorporate the results more readily into their lifestyles. More than anything else, regulation means peace of mind for everyone involved.