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Genetic testing – how much would you want to know?

Posted by on February 4, 2015

EmmaBy Emma Kelson AMSB, training officer at the Society of Biology

Given the choice, would you want to know whether you are likely to suffer from a deadly disease in the future? For those who are curious, you can now get some insights by using the genetic testing kit ’23andme’, which has recently launched in the UK.

23andMe is named after the 23 chromosomes that contain genetic information (in the form of DNA) in each human cell. The company describes itself as a “personalised DNA service” and aims to inform individuals about their genetic material (genome). This is linked to the growing discipline of personalised medicine, which looks at the genetic profile of an individual and uses it to provide tailored medical treatment[1].

It’s very simple – for £125 you can order a DNA collection kit online, provide a saliva sample and send the kit back to be analysed[2]. A report is then generated, which contains information on over a hundred different health and personal characteristics, including the risk factors for diseases such as cancer and the presence of genetic variants linked to hereditary conditions such as cystic fibrosis[3].

dnaThere is also ancestry information, for example you can find out how much of your DNA is descended from Neanderthals![4] The information is anonymous (customers are given a code that corresponds to their testing kit) and it is not diagnostic but individuals can choose to share the results with their doctor.

Genetic testing has attracted a lot of criticism. It is not 100% reliable and there are concerns that people may seek unnecessary treatments and become distressed and anxious needlessly. “23andMe” was even banned by the US Food and Drug Administration (FDA) due to concerns about accuracy[5]. It is not entirely clear what might happen to the data collected as the information is not completely private. There are worries that this information could be used in ways that negatively impact people, for example by affecting their ability to get life insurance as well as damaging employment and education prospects[6].

Building a large database of genetic information isn’t always a bad thing. In total 650,000 people have signed up[7] for 23andMe since 2006. This is great from a public health point of view as it allows those parts of the population who are genetically susceptible to diseases such as heart disease to be targeted, which could ultimately save the NHS time and money. At an individual level, it allows people to take control of their health and alter their lifestyle accordingly.

10769514063_b26ef7dbec_kFurthermore, emerging evidence from a recent Nature study of over 5,000 people[8] suggests that in reality consumers do not exhibit significantly increased levels of anxiety or distress after using a genetic test. The preliminary data gathered from a survey in 2012-13 of over 1800 people indicates that access to this information does not motivate individuals to seek inappropriate treatments without consulting a doctor.

The genome is complex and there is still a lot to be understood. No test can determine for certain an individual’s future health as many other factors will influence this such as behaviour and lifestyle. Tests like 23andMe can provide access to useful information that may tell part of the story, and if regulated correctly consumer genomics has the potential to revolutionise healthcare, at the individual as well as population level.






[6] Clayton, E.W., (2003) Ethical, legal and Social Implications of Genomic Medicine. N Engl J Med.



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