Tis the Season to…Spit?!

Posted by Carolyn Martin on December 3rd, 2018 Posted in: Health Literacy
Tags: genetics, genomics

---

Guess what one of the most popular gifts purchased was during the 2017 holiday season?  Direct-to-consumer genetic tests. Yes, apparently a lot of spitting happened around that time or at least required it for discovering something about one’s health and ancestry.  These kits have been featured on celebrity shows, the news, and one particular brand was even on Oprah’s list of Favorite Things. Most likely it will continue to be a popular item this holiday season particularly with discounted prices and appealing (and rather aggressive) advertising directed at those wanting to know more about themselves. Many of these kits are even bought for numerous family members without even being requested.

But, should the public purchase these kits without a second thought? The Centers for Disease Control (CDC) think not. In fact, they and other agencies, associations, and organizations have attempted to caution those who are wanting to spit their genetic information into a tube. The “Think Before You Spit” campaign began in 2011 and has been regularly reprised by the CDC over the years.  Limitations of these sorts of tests were a concern when they first appeared on the market and continue to be even now. The validity and quality of these tests, whether for ancestry or health, need to be understood by users. No standard exists for these types of tests. Genetic testing is very complex and new discoveries and advances are continually occurring.

And what about privacy? Unfortunately, these types of genetic tests are not required to comply with HIPAA (Health Insurance Portability Accountability Act) as are genetic tests done through your healthcare provider. Many of these companies do offer a Terms of Use or similar statement which often includes some sort of privacy statement written in very complex terms. A company’s version of privacy may be very different from the consumer’s interpretation.

So, think before you spit. It can be easy to be caught up in the excitement to learn about your background but the reality is you are giving up very unique information about yourself once you send in that tube of spit as well as others such as your children if you have them do a test as well, which by the way, raises issues of pediatric consent and other ethical issues. Educate yourself and those who you know are considering using this type of test because you are giving away very unique information about yourself.

Where can you find information about direct to consumer genetic testing?

• The National Library of Medicine’s (NLM) consumer health resource, Genetics Home Reference, has expanded its Direct-to-Consumer Genetic Testing content to provide more in-depth coverage of this popular topic.
• The Federal Trade Commission provides facts about about this type of testing.
• The Council for Responsible Genetics published a consumer guide, “Ancestry DNA Testing and Privacy: A Consumer Guide”  in 2017 which explores this in greater depth.

Then ask yourself:

• What do you hope to learn from the results of the test?
• Are you prepared to learn something totally unexpected?
• How will this affect your family?
• Are you okay with having your genetic information available to others?

Also, ask your doctor or healthcare provider whether this type of test would provide useful information for your health

If you decide that you still want to take the test consider these questions, provided by Genetics Home Reference, when choosing a company.

This is all information you can provide not just for yourself but for your library patrons and others in the communities you serve whether in social media postings, in a newsletter or on your website. Provide your community with access to authoritative resources so they can make the decision about whether or not to use a direct-to-consumer genetic test as informed health consumers.