Cookies on this website

We use cookies to ensure that we give you the best experience on our website. If you click 'Accept all cookies' we'll assume that you are happy to receive all cookies and you won't see this message again. If you click 'Reject all non-essential cookies' only necessary cookies providing core functionality such as security, network management, and accessibility will be enabled. Click 'Find out more' for information on how to change your cookie settings.

This article first appeard on Be GOOD Early Intervention Ethics.

Would you spit in a tube and pay (about) one hundred pounds to find out your future health? A number of companies, including 23andme, Counsyl and DanteLabs, now allow customers to submit their saliva samples to find out if they carry genes associated with conditions such as Alzheimer’s disease, Parkinson’s and even breast cancer (for a sample report, click here).

These direct-to consumer (DTC) DNA tests are heavily marketed to young populations. For example, popular YouTubers have endorsed 23andMe to their (young) fan-bases, including Buzzfeed, Alyson Ryce, and Superwoman. Followers of these social-media celebrities are often offered “great deals” on DTC DNA products (for example, Buzzfeed offers viewers the chance to “win a trip based on your DNA” here). In an era where genetic testing is not only publically available, but also marketed as “cool”, it becomes critical to consider its role in the lives of young people.

Should young people be allowed to test for their risk of developing diseases, even if some of these conditions are “late-onset” and won’t develop for another 60 years?

To test or not to test?

A number of academics have debated the ethics of DTC DNA tests (for example, Berg and Fryer-Edwards, 2007; Boddington, 2009; Su, 2013) and the issue of whether young people should be allowed to get tested (for example, Duncan and Delatycki, 2005; Manzini and Vears, 2018).

Arguments for testing include:

Young people are competent and it’s paternalistic not to give them access to predictive genetic testing
Young people (and people in general) have a right to know their own genetic data
The test gives young people a chance to plan for the future and gives them more control over their lives (i.e. more autonomy)
With the knowledge provided by DTC tests, in some instances adolescents may be able to reduce their risk of the condition by eating healthier, taking medicines or using other techniques
These tests are convenient for young people: they are cheaper than private clinics, can be bought online and taken at home.

Arguments against testing include:

If a child has a positive result (they have a LARGER risk for a condition), parents may start worrying more about their child’s future, and this could harm the parent-child relationship
A positive result may also distress the young person, and make them look at themselves differently
Many conditions can’t be “prevented” and even if there preventative measures are available (e.g. surgery), young people can wait until they are older to do this
Most information on how to best “prevent” Alzheimer’s (and other conditions) are common sense, and include eating a balanced diet, exercising, not smoking – things that we should be doing anyways
There might be breaches of confidentiality (parents are informed of test results)
Young people may be discriminated on the basis of their genetic results
Young people may not be mature enough to make this choice, and testing a young person would undermine their future autonomy
DTC companies do not offer counselling services and do not have the resources to provide SAFE and ACCURATE post-test counselling.

What do you think?

It’s impossible to fully weight the pros and cons of offering DTC genetic testing to young people without hearing their own voices, attitudes and experiences. For that reason we are running empirical studies to understand young people’s views on predictive testing for (1) Alzheimer’s disease, (2) mental health conditions, and (3) physical and personality traits.

Stay tuned for the results! But in the meantime we would love to hear your thoughts, especially if you’re a young person. Would you think twice before spiting in a tube to reveal your DNA? Do you feel mature enough to make that choice? Leave your answer in the comments below!

In a time where sequencing the DNA is becoming trivial, it’s important that these ethical discussions are equally widespread, to help families and young people make responsible and informed decisions about whether (or not) to get a test.

Recommended readings

Berg, C., and Fryer-Edwards, K. (2007). The Ethical Challenges of Direct-to-Consumer Genetic Testing. J. Bus. Ethics 77, 17–31. doi:10.1007/s10551-006-9298-8.

Boddington, P. (2009). The ethics and regulation of direct-to-consumer genetic testing. in Genome Medicine doi:10.1186/gm71.

Duncan, R., and Delatycki, M. (2005). Predictive genetic testing in young people for adult-onset conditions: Where is the empirical evidence? Clin. Genet. 69, 8–16. doi:10.1111/j.1399-0004.2005.00505.x.

Manzini, A., and Vears, D. F. (2018). Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits. J. Bioeth. Inq. 15, 111–120. doi:10.1007/s11673-017-9828-3.

Su, P. (2013). Direct-to-consumer genetic testing: A comprehensive view. Yale J. Biol. Med. 86, 359–365.

About the Authors

Jessica Lorimer

Jessica Lorimer is a research assistant in the NEUROSEC team, working the BeGOOD Psychosis: EIE and Citizens: EIE studies.

MPhil,PhD Gabriela Pavarini - Postdoctoral Researcher

Dr Gabriela Pavarini is postdoctoral researcher in the NEUROSEC team, developing and leading Citizens EIE study.