In recent years, rapid progress in sequencing technologies and scientific research in the field of genomics has generated an exponential growth in the marketing of direct-to-consumer genetic testing (DTCGT), that is, genetic services directly offered to consumers through online platforms without the need for a healthcare professional or medical prescription.
Despite exponential growth of DTCGT, this model has generated considerable debate in the medical community, scientific associations and government agencies, especially, in regard to the validity and clinical utility of the tests and due to the lack of medical monitoring and genetic counselling both before and after the test.
There are many arguments in favour of the DTCGT model and, in general, they are based on the right of individuals to have direct access to their genetic information and control their lives and health (“empowerment”) and to the health benefits obtained from the results of these tests: knowing the genetic risk estimations and being able to take preventive measures or have a more proactive attitude towards health care; finding out how our genetic profile influences our body’s response to certain drugs and receiving a tailored medical treatment; finding out how our genetic profile influences our body’s response to nutrients or sports performance and, thus, adapt the diet or sports practice to our possibilities in order to avoid injuries or unwanted effects. Other DTCGT benefits are not directly health related: knowing genetic variants related to personal traits, finding out the origins of our ancestors, etc.
Moreover, there are those who claim that this model contributes to develop a more informed and health-conscious individual, thus improving the physician-patient relationship through confidence and adoption of medical advice.
However, a target of criticism in DTCGT models is the absence of medical advice, especially in the interpretation of results. This may result in patients misunderstanding the genetic risks of developing a disease and unnecessarily worrying or making non-informed decisions on treatments or other medical interventions or, on the contrary, creating a false sense of security. Also, there is controversy as to the way information on genetic risk of disease is presented in reports: it can be confusing and it does not consider the impact of other genes and factors, such as the environment, life habits, eating patterns, ethnics, family history, etc. on developing a disease.
Lastly, there are those who claim that companies offering DTCGT services tend to exaggerate the value and impact that the results could have on people’s lives at the present time.
myDNAmap follows the recommendations of the European Society of Human Genetics (ESHG) on direct-to-consumer genetic testing regarding the importance of the people’s right to information, the quality of genetic testing services, the clinical utility of genetic testing offered, the need for individualised medical supervision, the need to provide pre-test information and genetic counselling, the need to provide expert support to interpret the results, the protection of those unable to give informed consent, the respect for privacy and confidentiality (see our privacy policies), sample storing, their ownership and respect for ethical principles in research.
On its part, myDNAmap is on constant watch and shall adapt its policies to the recommendations of associations which are a reference on issues related to ethics, security and information handling.
myDNAmap believes that any company that provides personalised genomic services to the general public must do so through a qualified healthcare professional right at the start of the process in order to provide sound advice and, especially, during the interpretation of results.
Due to this, our physicians and specialists are at the users disposal through our online platform before they request the genomic test, in order to inform users of the potential utility and limitations of the results, as well as of the benefits and risks of having access to one’s genetic information, so that they can assess the convenience of the test, and also when they receive the results, to help them with their interpretation and to avoid confusion or misinterpretations.
It is of paramount importance that users understand that we do not offer diagnosis services and that they should not make any medical decisions based on the results alone. We encourage our customers to contact specialists to enhance advice regarding disease prevention and/or treatment.
Also, due to the fact that genomic tests only give specific information on health, we have developed the “myDNAmap app” where users can enter any relevant health information (illnesses suffered, results from analyses and from diagnostic tests, family history, etc.), as well as nutritional information, habits and geographical location, all of which will be weighed during the genetic counselling and may be used in future medical consultations.