What should I know about buying a genetic test online?

Buying genetic tests via the internet is becoming as easy as ordering a new sofa on-line. Paternity tests have been available for some time now and the companies that offer this service are a dime a dozen. However, more and more companies are cropping up offering genetic testing for genetic syndromes such as cystic fibrosis and hemochromatosis. These private companies are more than happy to send a kit to anyone and requires only a simple mouth swab with results being available in a matter of weeks.

Patients advocate this option as being straightforward and allow them to retain their privacy from the insurance companies who are more than interested in knowing such information.

However, the option of ordering genetic tests over the internet raises some concerns that render this option less than ideal. Genetic testing is not something to be taken lightly. There are many issues that arise such as how one might feel to find out they carry a genetic alteration. Or the experience of survivor guilt when a sibling is found to carry the alteration. Counselling is a vital part of genetic testing as one wants to make sure they fully understand all of the implications.

There’s also the issue of medical follow up. As the results are not going to back to a health care professional (usually) who is to follow up and ensure the patient’s are receiving appropriate care. Will the patient fully understand the inheritance pattern and realize the risks to their family?

Will the patient understand the results appropriately? Genetic testing is not black and white in that different alterations can play a role in how the genetic syndrome manifests or is even transmitted. A trained health care professional’s job is to interpret these results accurately and what in fact it means for the patient.

There are no laws in place to protect the public against ordering such tests on-line (that I currently know of). I believe it is the genetics community to protect the public against such potential harm.

Leanne Mercer

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