Abby Lippman is a professor emerita at McGill University
For $199, Canadians will soon be able to buy the latest genetic play kit – and will be able to do so without any serious regulation by Health Canada with regard to its uses or usefulness. Nor will there be any oversight for identifying its potential harms.
23andMe Inc. has been vigorously marketing its DNA testing kit for about eight years in the United States. And apparently 20,000 Canadians have been sufficiently convinced of this commercial DIY-approach to learning about genetic risk factors they may be said to have, as well as about their possible genetic ancestry, that they have laid out the funds needed to import the product to use at home.
Even if one ignores some very important issues – such as just what DNA patterns can predict about the likelihood of developing any of the diseases for which risk factor screening is done (basically, little if anything); how using the 23andMe tests to determine health risks is currently prohibited by the FDA in the U.S.; and the potential for obtaining disrupting, disturbing, or even destructive information about family connections (which is a far from trivial possibility) – serious additional concerns arise in this country. These stem from the ongoing absence of genetic privacy and genetic discrimination laws in Canada, a contrast with the U.S. where there are (some) longstanding protections against misuses of DNA data.
This suggests that when someone in Canada gets a report of its findings from 23andMe, there is no way to keep insurance companies or employers from asking about it. Maybe not directly, but during an interview, applicants might be asked if they have ever had any genetic testing and, if so, what was found. Not to reveal that testing was done could be seen as providing a false answer and thereby disqualify the individual from coverage or a job. Maybe this is not as bad as learning a father is not really the man you thought he was, or as pleasing as finding you have a sister who was adopted into another family living nearby, but definitely a more negative outcome than is desirable.
In July, 2014, the Office of the Privacy Commissioner of Canada released a statement about genetic testing to "urge the life and health insurance industry" to "expand its voluntary moratorium, which already requested members of the Canadian Life and Health Insurance Association "to refrain from asking applicants to undergo genetic testing." The expansion would include a request to members to also "refrain from requesting access to existing genetic test results until such time as they can be shown to be demonstrably necessary and effective."
This is far from being very reassuring, especially since even if accepted by CLHIA, it seems to be neither binding nor enforceable. It also does not deal with use, mischievous or otherwise, of test information that employers may request.
While an apparently "obvious" answer to these problems might appear to be the creation of strong and enforced laws that prohibit genetic discrimination and protect genetic privacy – not necessarily the same – the obvious is itself problematic: how does one define "genetic information" or "genetic privacy" in full recognition that genes are neither determinative nor are DNA data themselves very informative. Moreover, it can be argued that 23andMe is actually basing its financial future not on providing people with helpful health information, but on compiling a huge database of information that it can subsequently sell to researchers (and others) – and Canada lacks means for regulating how such collected data might be used by 23andMe (as well as by other corporate groups such as Google and Facebook)
Politicians, especially those in Parliament today, are not very open to nuance and have a sad record of rejecting data that do not conform to their pre-existing beliefs. Putting them in charge of ensuring justice, genetic and other, would therefore seem particularly ill-advised. Nor are insurance companies or for-profit corporations appropriate guardians of our wellbeing.
Policies and laws about discrimination, genetic and other, need to be developed from the ground up, based on views from an informed citizenry engaged in respectful public discussion of all the issues. This can begin by exposing the faults in the genetic hype the media employs with each banner headline of how someone has "found a gene that..." Until the myths are busted, the hype eliminated, and we have had robust exchanges of what really puts health at risk (poverty, violence, colonialism, racism, et al.), let's hope genetic self-testing kits are stopped at the border.
Eds Note: An earlier version misidentified the Office of the Privacy Commissioner of Canada as the Privacy Commissioner of Ontario