Genetics is having a bit of a moment as of late. What was previously a mysterious and unexplored field has exploded in recent years, thanks to dedicated expert research and innovative technology. However, this ground-breaking scientific revolution brings a plethora of ethical grey areas. The phenomenon of direct-to-consumer DNA testing services, including websites like 23andMe and AncestryDNA, saw 12 million people in 2017 completing home genetic tests; more people than in all previous years combined.
23andMe, founded in 2006, gives any paying customer the chance to learn about their genetic makeup, for the (arguably reasonable) cost of $199. The service provides data which ranges from the probability that you will potentially develop certain fatal diseases to your genetic weight (predisposition to be fat or thin) and even how they digest lactose. All this can be achieved by simply providing the company with a vial of saliva and filling out a questionnaire. The service works by analysing SNPs (single nucleotide polymorphisms), which are differences in your genome that set you apart from others. SNPs are easy to test for these days thanks to the commercialisation of genomic technologies. These are inherited from your parents, and give rise to your so-called biological blueprint; 23andMe sequences approximately 1 million of the 10 million SNPs you possess. The tested SNPs can be used to infer which SNPs might make up the other 9 million which weren’t tested.
Services such as 23andMe have garnered a fair amount of criticism from a bioethical standpoint as concern has been expressed over the practice being vulnerable to potential ethical potholes. Say an individual – let’s call him Brian – signs up for the 23andMe website. He purchases his saliva collection kit, pays the required fee, sends his saliva to the laboratory and fills out the surveys. He waits the required 6-8 weeks and the results come back. The report tells Brian that his genetics make him averse to the taste of cilantro (he always hated guacamole!), that his ancestry is 4.5% Italian and, most importantly, he tested positive for the genetic variant associated with an increased risk of developing late-onset Alzheimer’s disease. This is the catch – you may learn something about yourself you wish you didn’t know. Some individuals would prefer to live in ignorance of having a high likelihood of developing a debilitating neurodegenerative disease for which there is currently no cure, and who can blame them? There are other implications too; consumers could be charged higher insurance premiums or even denied insurance should it transpire that they possess a genetic variant linked to a fatal disease.
Additionally, the results may not always be accurate. In fact, a study published in Genetics in Medicine found DIY genetic kits to be inaccurate two out of five times. Completing DNA tests from two different companies has been shown to come back with utterly different results. Considering the impact of some of the information that these tests can return, full accuracy becomes unquestionably crucial.
With such a massive database, the issue of privacy is also called into question. In the small print of the 23andMe website, it discloses that the customer must offer consent for their genetic and personal information to be made available for use and analysis in scientific research. The business plan of sites such as 23andMe is not selling home DNA kits to curious customers; the majority of these companies’ big bucks is coming from selling consumer data to third-party companies for research.
The likelihood that your data will be used grows with every test. The website states that the customer should be aware that their “genetic data, survey responses, and/or personally identifying information may be stolen in the event of a security breach.” In October 2017, the genealogy site MyHeritage reported a breach that resulted in data from 92 million accounts being exposed. Although no personal genetic information was obtained, it was enough to instil fear in users of genetic testing facilities around the world. The loss of genomic privacy could prove wholly detrimental in areas where ethnic persecution and racism is still rife, and in the hands of employers, an individual’s genetic information could lead to workplace discrimination.
With all that being said, the benefits of advancing genetic technology could prove miraculous. Some might argue that the construction of a national DNA database could provide an invaluable tool in the fight against crime, as displayed when the Golden State Killer case in California was recently solved. It can also aid scientists in gaining crucial insight into genetic diseases, which could lead to much-needed treatments and cures later down the line. Gene-editing tools such as CRISPR technology (short for ‘clusters of regularly interspaced short palindromic repeats’, a family of DNA sequences involved in the immune systems of bacteria) are set to begin human trials in the very near future, and could potentially offer life-saving treatments.
The question regarding mapping your DNA composition has changed from whether one can to whether one should. The hard facts stand: learn about your genetics at your own risk – this knowledge offers much potential but also much peril.
By Grace Browne – Science Writer
