Marketing of genetic testing must be regulated to ensure the public stays safe

VANCOUVER – Doctors of BC says British Columbians should be cautious when making a decision to engage in direct-to-consumer genetic testing, and is calling for federal regulation of the industry.

Direct-to-consumer genetic testing (DTC GT) means the public can obtain genetic tests via the Internet, television, or other marketing or advertising avenues – without the involvement of their doctor – simply by ordering a personal testing kit, providing a saliva sample, mailing it off to the lab, and then waiting for the results.  This information can identify predispositions to illnesses and diseases such as cardiovascular disease and cystic fibrosis, and an individual’s response to certain medications. The direct-to-consumer approach has become increasingly popular and sophisticated over recent years.

A new policy statement from the organization representing BC’s physicians states if the privacy of DTC GT results is not adequately maintained, potential for harms include discrimination and stigmatization. Furthermore, test results could lead to inappropriate use of other health care services such as additional unnecessary testing.

“With the public increasingly interested in direct-to-consumer medical testing, our primary concern is their safety,” said Dr Andrew Attwell, a Victoria oncologist who is chair of the working group that developed the policy statement.  “We want to ensure that quality patient care is not compromised in the process. We are concerned that consumers will use their DTC genetic test results to make decisions about their health without the advice of their doctor – we don’t want to see that happen.”  

To better protect consumers, Doctors of BC is calling for:

• Federal regulation of marketing and health-related claims in connection with DTC GT
• The development of national standards for reliability and validity of DTC GT
• Public education initiatives aimed at increasing awareness of potential implications
• Increased education for physicians on interpreting test results

The marketing of direct-to-consumer genetic testing is not regulated despite the range of proposed claims and the health literacy required to interpret the results. Doctors attending the Canadian Medical Association’s annual meeting last month unanimously supported regulations on the marketing of DTC GT.  Regulations do exist for doctor-initiated genetic testing.

Doctors of BC has also released an accompanying policy paper titled Precision Medicine: Understanding our genes for better health, that identifies challenges and opportunities of integrating genetic testing into the clinical care setting. 

The policy statement on direct to consumer testing can be found here. The Precision Medicine paper can be found here.

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For more information:

Sharon Shore, Communications & Media Relations

604-306-1866 (pager)